Frustrated with RA and Meds
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hawaii_jewel posted:
Hi everyone.. Just a bit frustrated today. I've just been able to get up after 3 days of bed rest. Yes, preparing Thanksgiving dinner put me over the top. And I got my methatrexate shot on Friday that made me so nauseous, queasy, and feeling so lethargic. Miserable and I am getting so frustrated on this medicine. Don't let me get started on my views with taking prednisone. I have 2-3 good days a week. I feel like my family doesnt understand my illness and i am feeling so alone going thru this. It's like my husband would rather not talk about it and turn the other way. I have Seronegative RA, diagnosed in May and I can't seemed to get a handle on this. I read that keeping active helps; but how can I do that when these meds have me down? Its like i take one step forward only to take 2 steps back. Agh..sorry, I'm venting. Any words of encouragement or advice from those who remembered what it was like at the beginning of this horrible trek to find a balance.
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Born_to_be_blonde responded:
Oh Girl I KNOW how you feel. Im on month three so Im still at the begining. But maybe I can help...just a little bit. First of all ask your doctor to perscribe you 15mg phenegren. It will make a little tired but it will compleatly take away your nausea. I would trade those two ANY DAY! Second, get all dolled up before you give yourself the shot. I give myself a mani & pedi, shave, wash & straighten my hair, put clean sheets on the bed, and put on a nice pair of silk jammies. Being sick in bed is no fun and its especially no fun when you have to do it for half a week EVERY SINGLE WEEK. This makes it just a tad bit more bearable.

My husband also had problems really talking about it too. I would find short articles and send it to him thru email and I started making large crockpot meals so that him and my son had a hot meal every day even though there was no way I would have had the energy to make it. He is also going to go to my next RA appointment with me so we can talk to the doc together (Im compleatly shocked by this). I think his demenor changed a little bit when I told him how scared I was. How I could be deformed for the rest of my life. How he deserved someone who could keep up with him. How I felt useless and worthless because of RA. Slowly after that things changed.

It will all work out. I get it. Its hard and people dont get it because we look "fine". Feel fee to chat by email if you wanna talk more and go through the journey together. Magmccormick@yahoo.com
 
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xperky responded:
Hi. I understand your frustration! I was diagnosed in July and have taken mtx for a month now. Only a 3-pill dose so far. I get the up and down effect too. Nibbling on crackers helps me a little.

Just like borntobeblonde says, it helps me to get myself all groomed and things cleaned up before mtx day. I've also been trying to cook a meal that will provide stomach-friendly leftovers on mtx day. My husband will pick up the slack if I don't feel up to doing the essentials, so I'm very lucky there.

I can relate to having trouble with activity. I push myself to "keep active" but it's nowhere near the activity level I used to be at. You should see my beloved yard these days...awful. And don't even look at my carpeted stairs...ugh.

Sorry we are all going through this. At least we can share our thoughts. I'm like you and trying to find a balance.
 
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blugixxer6 replied to xperky's response:
I share the same frustrations I know my wife has some understanding of how I am affected by RA but my two grown children I don't think so. my oldest calls me old and makes comments about how slow moving i am and so on and the youngest really doesn't acknowledge or talk about my symptoms at all. I try to explain that my good or bad days depend on how much pain,stiffness and just being wiped out tired I get. I am thankful that I have been able to keep working so far and I have gotten great support from my coworkers.I still battle the side affects of the meds especially the MTX but that has improved some since I went to the injection.I guess I just needed to do some venting myself. to me this is a lonely and frustrating illness that I am trying to adjust to as best I can.
 
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hawaii_jewel replied to Born_to_be_blonde's response:
Thank you. I get my shot today and going forward I will doll up before going. And yes, I would love to chat. I will keep your email handy.
 
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hawaii_jewel replied to xperky's response:
Xperia, thanks for your feedback. I hear you on the carpeted stairs, I can get a bit neurotic at needing my counters clean and everything put away before going to bed. What's that called when you need to have everything in order and put a certain way? OCD..LOL. Learning to not worry too much about it. My family try their best. Before RA i was active as well Karate and cycling. It bums me out on the beautiful crisp mornings that a bike ride is not doable. Or when pics of my fellow karate moms are advancing in belt levels Oh we'll, for now this is my challenge and I'm determined.
 
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hawaii_jewel replied to blugixxer6's response:
Aww Blugixxer6..at least u r working and have supportive coworkers..keep going. I had to quit due to the disability, my job was very stressful. I believe it's healthy to vent, we are all in the same boat. No one but RA suffers understand what we go thru. My hubby is coming around and my youngest boy stays by my side eager to help when dad is away. But not being able to do what I use to is frustrating. But like you said.."as best I can"..
 
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Hanyt responded:
Hi. I'm sorry to hear what you are going through. But have you ever considered going for alternative treatments at the same time. My RA has been with me for over 2 years now and throughout my RA journey, I have been working on both conventional and alternative treatment. I come to understand that if I rely on drugs alone, I may end up putting more and more drugs when the earlier one doesn't work one day.

The whole RA experience is a very difficult ride for me. I shy away from friends who do not understand this condition. My family has also started to learn the severity of RA while my husband is the one who is always there for me, giving me ample support and motivation to fight my RA battle.

Recently, I have just started my own blog (www.myradiary.com) on everything RA. I share information about my RA and ways (mostly alternative) to find relief and I certainly think that there are posts that you can find valuable.
 
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RADBA3317 responded:
Sorry your having troubles. I was just diagnosed with Sjogrens Syndrome November 2nd and have been on MTX 3 tablets Friday and 3 tablets Sundays. I am usually down for the weekend and then Mondays I have some troubles but go to work anyway. I am on the prednisone also, but stopped taking it yesterday...gained too much weight which doesn't help matters at all! I have another Dr Apt Monday, which my husband will be attending. Going to ask about injections. I haven't lost any hair yet but I do expect it. Right now at this moment I think my kidneys are acting up....it is nice to have a place to vent! I sure hope we both find answers soon.
 
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hawaii_jewel replied to Hanyt's response:
Thank you. Your blog is helpful and encouraging. I question the drugs they want to pump me with. I refuse to take the prednisone so they want to give me 1800 mg of ibuprofen. Ridiculous.
 
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hawaii_jewel replied to RADBA3317's response:
I refuse to take the prednisone so they want me to take Ibuprofen. Ridiculous. The shot of MTX is better on my tummy. Go to the post of Hanyt and read her blog page.
 
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NZIppy1 replied to hawaii_jewel's response:
I have had systemic JRA since i was 2. I am 40now. I have had 16 orthopedic surgeries and i have a history of stress fractures.I have had many terrilble flares. My sedrate is off the charts when I have these flares. I have arthritis in all my joints. However, my family is phenomenal. Due to my disability I need help w/all my activities of daily living. I am married and have no children. I am on many many meds including Enbrel, prednisone and many others. Iwas onmethotrexate many years ago and then on the injection also when the pill stopped working.I use a walker to walk and I use a wheelchair to sit. I cannot sit on anything else except my hip cushion on my wheelchair. Take one day at a time one step at a time. USe whatever you need to make you happy. 2011 was the latest year of challenge for me. I had a bone infection. I was admitted 4x and had 5 surgeries. I had toput all my weight on my left leg and now that hip replacement has moved. I have had both hips both knee and my elbow replaced. My right femur has broken 3x alreay. If it breaks again in the same place there is a possibility it may not heal and then amputation. So, I am very happy to be well walking and I work at the local library 7 hours weekly. My husband works full time and i rely on him for health insurance. He is amazing. Surroudn yourself w/people who care and understand. I am fortunate to have an amazing support network. I see the best team of physicians at Columbia Presbyterian Med Ctr and my orthopedist is at Hospital for Special surgery in NYC. We travel an hour for my health team. Do whatever it takes and make sure you trust and are seeing the best doctors you can. Make sure you have a rheumatologist. My illness is alot like Lupus. Systemic JRA affects all joints and cause pericarditis which i had when i was 4 and lost 1/4 of my stomach. See the right team of health professionals. Distract yourself w/whatever makes you happy. I use reading, dvds and I love Joel Osteen's philosophy. This is the best advice i hav as I have a chronic illness and disability which I deal w/daily. Surround yourself w/people who care and understand> Thank you for listening.
 
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MasmalaMamala responded:
I can relate so much, my family and boyfriend all seem to share the same vocabulary and tolerance when it comes to my affliction. They act as if I'm exaggerating the pain and symptoms. The only thing they can't ignore is the swelling and the limping and the fact that I have the tests to prove it. Initially I accepted the Methotrexate shot but once I read all the side effects I discontinued use. I already have Rheumatoid Arthritis, Hypothyroidism, Anemia, Depression, GERD, and don't need to add liver damage to my list of health problems. Vent away, I'm lucky I have a friend who is all to familiar with pain and we share our ouch stories daily. The fact is this is a seriously debilitating illness and there is no cure and the cause is still unknown. If a solution doesn't exist I can almost deal with that but what I can't deal with is the cold shoulder and unsympathetic attitude some people have towards our kind. Don't get me wrong there are some angels out there who let me pass first in line, on a bus or offer me a seat. I'm so shocked when they do it that I ask "are you sure, or "it's okay you don't have to, but thank you anyway." That's what gets me when society, employers and Social Security don't accept it or do more to make our already painful lives a bit easier. I've had arguments with everyone about my pain and anguish. They all think it goes away with diet and exercise. Well all I can do is some chores and maintain weight with little to no weightloss. They only understand me when I tell them about problems they can't overcome theirselves. Perhaps if we treat them like they treat us when they are in pain, weak and vulnerable they will get it. I did it to my boyfriend and he got the message.
 
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MasmalaMamala replied to NZIppy1's response:
Wow I bow down and admire u wholeheartedly Nzippy1 for all that u have endured and overcome. My RA was dx when I was 16. RA has affected just about every joint on my body, including my eyes. I cry from pain or scream when I bump my knuckles or wrist on something. I limp and some of my parts are becoming useless. I can relate and sympathize with all sufferers and hope theres a cure or better treatment for us all in the very near future. I'm not as strong and hope I can hold on as long as you all bravely have so far. Best wishes and Happy Holidays to all. God Bless the people and family members that treat us kindly.