I haven't written here in a good log time. I have just been so unhappy, of course nobody know it. I am on so many meds and not feeling good!

I am taking methotrexate injections weekly, plaquenil , folic acid two different things for my stomach, prednisone and gabapentin. I had another flair up in the middle of the might. I waited 5 1/2 hour for the hospital to give me 60 mg of prednisone. I have not been given any pain medication except Tylenol or tramadol and neither work. I'm supposed to start Embrel maybe in three weeks. It's as it has a lot of side effects part of me is scared and the other part we'll I won't say. So I'm taking aspirin and alive helps a tiny bit. I am mad at the world! Maybe I just haven't had it long enough and the ones around me don't get it. Thanks for letting me blab I guess just delete this

40 Replies

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  • When we've been in horrible places it seems as though it'll never end. I'm also waiting for adequate treatment. So a bit of fellow feeling. Can you find a bit of sunshine today? It might help a little

  • Maybe, if the pain lets up a bit.in Florida where I live the doc's say to just take Tylenol and that doesn't work. Some type of pain medicine would help till the prednisone kicks in. Thank you. I feel bad to come on here for support, but is haven't found anywhere else to so. And I can't talk to anyone here they don't get it?,,

  • Hi Abby11, Hang on in there I think we have all had times where things do not work for us and we feel there is no end in sight, but you have to be strong for you because no one else will. You may get a good response when you start your new meds in a few weeks you have just got to hold on I know its really hard. One thing is for sure some people don't understand what we go through on a daily basis to get through the day but we get there because we have to. Go and see your GP tell them that the pain killers are not working or the helpline at the hospital.. maybe a steroid injection to help you until your medication changes. I wish you luck with it hope the Enbrel works for you xx stay positive your not alone... I know it feels like that sometimes.xx

  • I'm sure you do feel like this sometimes. And it doesn't feel food! My the doctors here don't give out pain meds.

    I know a lot of bad drug use goes on here. However they know me for years, they don't give it to anyone.thank you!!

  • Hi Abby11 I am so sorry you feel like this at the moment, life is hard when we have RA and then of course the effects of our drugs, my heart goes out to you! I too have been having a very hard time for the last 16 or so months with numerous illness's, what I do is try and look at others so that I don't get so angry at the world and life, when I see the suffering of others around us and the world I feel a little humbled even if I am suffering,

    try and be kind to yourself, lots of rest and some nice times with people who uplift you and just try to get thru an hour or two at a time. Take care Trish

  • Thanks Trish, those are the people I surround myself with, sometimes they just seem like strangers. I'm so sorry you have been having a hard time. Having other illnesses would make it harder. Thank you for your kind words. I'm sure or I think when daylight come I will sit out side. Thank you! Abby

  • Thinking of you, hang on in there, and go and see your gp xxx

  • I will call as I have other times. Will see what happens. Thank you! I hope you are doing ok Allanah. I will let you know what happens. XX

  • Why r u apologising , u know we r here for you xx you sound very down , it hit me too at one stage, the pain just caused me to get depressed .

    I have got the diagnosis of Firoblastic rheumatoid disease plus RA pus Sjogrens disease. Waiting to start new infusions, thanks for asking . Keep strong honey xx

  • I'm really not one of those people that complain and really share my feelings like this. I just wouldn't more bring anybody down, especially they're already there. And I know many are.

  • My gosh girl how do you get all that I thought my sister had the sojourns but she has something similar. I sure hope they give you everything you need I can't imagine! XXX

  • Yes Abby but you are just as important. Use messaage if it's more comfortable for you. Thinking of you xx

  • You are so kind. How do I do that?

  • Go to the very top of the page on the top green bar. There's an envelope. Press it and it brings up the message page. You put the persons name and a message and send. You can do a group one too and put a few names to have a group chat this section is still under the rules of HU and can be read by moderators.

  • Ok I'm going to test it

  • Thank you all for all the positive things you have said. I know each one of you have some sort of issue with the nasty mean RA an yet your still all so nice to me. Thank you, kindly to you all XXX Abby

  • I'm on similar meds to you Hun. I start methotrexate tomoz so bit nervous. I feel your pain Hun and send u massive gentle hugs xxxx

  • Good luck with those Pinz hope they work for you xx

  • I was very scared to start the methotrexate. It's funny I didn't get any side effects whatsoever but I still don't have any obviously I guess it's not working but I didn't feel sick. I hope it works for you with no side effects. Thanks Pinz

  • So very sorry - it's so sad you're so unwell but sure you've come to the right place to talk. It may not help physically but we all know how pain in so wearing. A lot of thoughts are with you. X

  • Whatanug1

    You are so kind! That's what it is the pain is just wearing on me! It's morning here in Florida so I'm going to find somebody somewhere to give me medication for the pain. I left a message with the nurse at the Rheumatologist office she doesn't know why this doctor doesn't give it out either.

    Thank you so much! XX Abby

  • Hang in there!!!

  • I'm trying! I know all of you are trying to hang in there. Sometimes it's just not easy

  • Hang in there Abby! I get the feeling things will improve for you X

  • That's what I hear. I'm trying

  • sorry to hear you feel so unwell but do hang in there abby xxx

  • I am trying my best thank you!

  • All the above with a gentle HUG (X)....wendy x

  • Thank you Wendy the gentle hug was wonderful

  • I appreciate all of you very much, all the motivational things you've said. You're great! So so happy you're there for me!

    I had some pretty bad thoughts in my head last night thanks to all of you a lot better

  • By the way I got a phone call today they're sending my Enbrel Tuesday so maybe that's a good thing. Hope the side effects are ok

  • Hi Abby11

    I really am sorry you are having such a rough time. It really is a bummer. People don't just understand, and doctors do not listen. We know our bodies better than they do, therefore, they really should listen to their patients. Ask your doc about trying pregabalin instead of gabapentin. It is thought to be the better of the two drugs which are of the same group. I too am using Enbrel, it took a while but within six months what a difference in me. It has taken six years to get to this stage, and it has been a slog. Yes there are side effects but hang in there it can really be worth the struggle. Since my doc switched me from gabapentin to pregabalin I have not looked back. Yes, I do have issues, but it's trying to reach a happy medium. Even I am not sure if I am truly there yet. But keep on trying.

  • I will ask my rheumatologist about that other medicine. I wrote it down. Ty for for the advise and sharing good information with me. It does help. Do you get flair ups with all the meds your on? I went back to the ER the pain in my feet was just unbearable. They gave me 15 pain pills. It's not much but better than nothing.

    I'm glad you are feeling somewhat better!!

    Good thoughts to you Footdoc xx

  • Hey all, it sounds as if we have/ will all experience 'down' times and anxiety. I am just so pleased to be a part of such a supportive team. Wishing us all a weekend of minimal pain...

  • Paulable,i agree with you! I tell all the docs at the hospital and gp about how wonderful everyone is and I wish I lived near all of you. Very nice message!

    Thank you! XX

  • Hi Abby,

    How interesting, I live in Florida too !

    I'm sorry to hear you are having a rough time. This disease is so unfair to all of us.

    You mentioned some meds you are on. I also take Methotrexate injections, prednisone, gabapentin, Meloxicam, Folic Acid in addition to all my other meds for Hypothyroid , allergies and so on. I've told myself this is just my new way of life. I have Fibromyalgia & am on a new med for that too.

    It's ok to vent, to be sad, feel down. It's especially hard if you aren't getting support at home. It's difficult for family & friends to know what it's like to have RA. Have you tried to explain it to them ? Do you know the Spoon Theory Story !

    This is a great place to vent and tell your real feelings about how this has changed your life because we all understand .

    As a a patient , I believe it's important to tell our Doctors if meds are not helping. They can't treat us until we speak up. No one knows your body like you.

    Do something nice for yourself whether its a treat, a massage, or a short outing to get something for yourself.

    Best Wishes for feeling better !

  • Wow! I can't believe you live in Florida! What a small world. I live in Sarasota. But grew up in Miami.

    I do tell my rheumatologist everything but she doesn't listen. I lost my health insurance so I can't pick a doctor. She doesn't even have an answering service.

    If I'm having a bad day or a flair up and say it to a friend or some family "they say well you look good" so I avoid people.

    I never heard of the spoon theory story, would like to hear it.

    This is a great place to share and listen. I must say it saved me a few days ago. I never had bad thoughts until then. At that time I got on the site, and made my thoughts better.

    Thank you for sharing Hoping 4 goodhealth! XX Abby

  • The Spoon Theory

    by Christine Miserandino butyoudontlooksick.com

    My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

    As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

    I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

    As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

    At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

    I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

    Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

    She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

    I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

    I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

    I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

    We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

    When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

    I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

    Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

    After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

    Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

    © Christine Miserandino

    *We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

    - See more at: butyoudontlooksick.com/wpre...

  • Than you Abby for reminding me of this, you have helped me today xx

  • Love this....TY

    ((XX))

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