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Rheumatoid Arthritis Community

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Reply: New to RA - 27 years old- what should I expect?

Hi There, You posted this three months ago so I hope you have discovered you don't...

Posted by CrystalLarel

Hi There,

You posted this three months ago so I hope you have discovered you don't have to give anything up. You may have to slow down, be a different version of yourself but still yourself! I'm a 32 year old full time High School Teacher with a 16 month old baby girl. I'm also married to my husband of 9 years (High School Sweethearts, he's a saint I tell ya). My house isn't as clean as it used to be but I'm still very involved with my little one, she wants to be carried by only Mom and I'm not giving that up! She won't want that forever so I choose to hurt more to carry my baby. I teach Clothing Design and that involves sewing, I don't have time to do as much as I would like but I can tell you it's possible to still do it. You may need breaks but I'd suggest supplementing your sewing with other crafts that don't use so much of just your fingers, scrapbooking? Though I know some die-hard artists don't consider scrapbooking a craft, I enjoy it. Find a way to fulfill your passion, teach others?! Contact a local sewing supply store and offer your services, paid or no, up to you and what you work out. Do something artistic, something to satisfy your need to create, even photography. I'm not saying not to sew, just to supplement, unless you want to sew all the time. We still get to choose how we spend our time, I know I will pay for a day in the garden with three days of pain so I only do it once a week. I know what I will pay for and I make my decisions accordingly. It's not fun but I still get control over my life because I get to choose what I do. I refuse to give anything up, I will do less of one thing than another. Life is a series of trade-offs, for everyone. Ours just involves pain, which is no fun but not impossible.

You should be able to keep working. I am a full time teacher and the only times I miss work are to travel to see my Rhumatologist in Seattle (four hours away from where I live, there is only one in my area and I've heard he's not good, I want the best). About once every six weeks, not too bad. Be sure you talk with your employer though. Make sure they know that your job is important to you (reassure them of that), they also need to know that you may need to move slowly and that you will have good days and bad days. There are laws that protect you in case you have to miss work, The Family Medical Leave act is something you may want to look up. Hopefully you don't need to use it but just in case you need some backing it is there for you. If you are worried about not working hopefully this means you are in a workplace that supports and cares for you.

I am on so many medications, we share pill popping royalty titles (legally

. My husband doesn't believe in pills either. He says he wants to know when the pain goes away on it's own and pills mask that...mine won't go away on it's own (the pain) so I need the pills to do that. I was so upset by the fact that I knew I had to be addicted to my pain meds, after 2.5 years, I had to be. I began talking with my doctor about addiction and she assured me that while I am dependent on them I am far from addicted. People with addiction only want the high, I want pain relief. Talk to your doctor about your feelings about taking pills, addiction, dependency, and hopefully that helps. They study drug addiction and see many people with your condition.

I am running out of "characters" here so I hope I've given you some good information.

Take Care, CrystalView Thread

Posted byCrystalLarel

3 Replies | Reply | Watch This DiscussionReport This| Share this:New to RA - 27 years old- what should I expect? Hi There, You posted this three months ago so I hope you have discovered you don't...

Reply: Weather effecting RA???

I thought I was on the mend this summer and the cold weather hit and my pain...

Posted by CrystalLarel

2 Replies | Reply | Watch This DiscussionReport This| Share this:Weather effecting RA??? I thought I was on the mend this summer and the cold weather hit and my pain...

Reply: Waiting for test results (frustrated!!)

Time to get a new doctor! I had the same problem. My doctor never returned my calls,...

Posted by CrystalLarel

8 Replies | Reply | Watch This DiscussionReport This| Share this:Waiting for test results (frustrated!!) Time to get a new doctor! I had the same problem. My doctor never returned my calls,...

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Reply: MTX & Tea

Whoa! There better not be! I need that caffeine to get me through the day! I'm a...

Posted by CrystalLarel

5 Replies | Reply | Watch This DiscussionReport This| Share this:MTX & Tea Whoa! There better not be! I need that caffeine to get me through the day! I'm a...

Reply: I need help

Hi, I hear your frustration. I've tried so many different medications and I still...

Posted by CrystalLarel

Hi,

I hear your frustration. I've tried so many different medications and I still have daily pain. I wanted to let you know that I have been on methotrexate for a long time and I have not experienced hair loss. I took six pills once a week, then moved up to 10 pills but I got nausea so my doctor took be back down to six. I've now begun injections because my rhumatologist said they are easily tolerated because they don't go through your gut. He hopes to give me more. I asked him specifically if my hair will fall out becaue I love my hair, I've got great hair! He said I need to conside my quality of life. I informed him that my hair and my quality of life go hand in hand. He had a laugh and said he wouldn't argue with me on that one. Not everyone has hair loss though. Even when I was up to 10 pills once a week I just got nauseated, no hair loss. If you don't like the side effects of certain meds talk with your doctor about it, no matter how "superficial" they may seem, I hear you, on the hair situation!

Every body, illness, and reaction to medication is different so use caution when you look at other people's symptoms. I've been reading the posts and found that I've tried almost everything out there yet not experienced the side affects (or relief that others describe). We are all so different but that is why we work with our doctors to find what works for us. I've tried Himura, Enbrel, and Prednizone (forgive the spelling of the meds). I know have Remicade infusions every six weeks. I also take Vit D, Folic Acid, Hydroxochloriquine, Hydrocodone, Tramadol, Gabapentin, and Robaxin (muscle relaxer). I hope the infusions allow me to lower the pain meds because I am on a lot. I am a working mother and I don't want to sacrifice my job (full time High School Teacher) or my role as a mother to a 16 month old baby girl. I just take it one day at a time and work with my team of doctors, I educate myself as much as I can, I ask 50 million questions because no one cares as much about my body as I do, they can't, they don't feel what I feel. I expect a lot of my body and my hair! I'm going to do all I can to protect both!

I hope this is helpful for you!

Take Care, CrystalView Thread

Posted byCrystalLarel

7 Replies | Reply | Watch This DiscussionReport This| Share this:I need help Hi, I hear your frustration. I've tried so many different medications and I still...

Reply: Hi all, I am new to this

Hi There, It's been two months since you posted this so I hope you are doing better. ...

Posted by CrystalLarel

Hi There,

It's been two months since you posted this so I hope you are doing better. I am 32 years old, I have a 16 month old little girl, and I am a full time high school teacher. I was doing an internship to be a High School Principal when the pain first materialized. I was actually told, "I don't know if you can do this job with your health" which is totally illegal and discriminatory. I had just finished a two year masters degree program while working full time and I suddenly had terrible low back pain. I didn't want anything to stand in my way so I continued and did receive my credentials but still had to deal with chronic low back pain. It took two years before my hands started to hurt and I finally had a blood test which confirmed I had RA. Then began the process of trying different meds, learning all I could, being exhausted, and trying to raise a little girl who deserves the same type of mother than other supermoms out there (I don't know how they do it by the way...).

I know the bad days suck but the good days will be so much sweeter. Your children will learn compassion because they will watch you struggle (which is okay). They will become better people. My mom had crippling migraines (not the same as RA but she was in bed, not always making brownies) She spent many weekends in bed, she is the most amazing mother and did what she could. She now has MS but still sits on the floor with my daughter and plays with her. It is a smile, a hug, and LOVE that matters. Not always what we envisioned but it's what they need more than anything else and we are capable of that.

Do what you can, put your kids first, and it will be okay. You mentioned that no one will want someone who has chronic pain and doesn't feel good...but keep in mind that you get an automatic filter to keep out the jerks! No relationship is perfect, there is a reason the line, "In sickness and in Health" is a part of the marriage vows most take. We must take care of our spouse in so many different ways. I cannot give as much as I take in my relationship, but I can love, hug, smile, and do what I can. My husband and I cannot have children, we came about having a daughter different than most families (that's another support group...

. I used to feel so bad that I was robbing my husband of something as huge as having a child. Then one day I realized how lucky I am to have a man who loves me so much that he CHOOSE to stay with me even though I can't have kids (he can). How much does he love me to choose this life? It's not easy but he thinks I'm worth it. You are worth it too. Someone will see what you have to offer, your strength, your love of your children, your compassion, and they will love you too. You are worth everything. Your "weaknesses" are only as big as you let them be, make your strengths overpower them!

Remember this is a crappy disease because we look healthy on the outside and our bodies are attacking us on the inside. My family has to listen to me to find out how I'm doing, I tell my husband it's a bad day or show him my swollen hands. I would encourage you to bring your mom to your doctors appointments, hopefully that will educate her on your painful situation. Whoever you end up with will have things you have to "put up with" too, we all come with strengths and weaknesses, they are only a big as we let them be. Show others your good stuff because I promise it outweighs the bad. I hope you are doing better and give those babies snuggles!

God Bless, CrystalView Thread

Posted byCrystalLarel

19 Replies | Reply | Watch This DiscussionReport This| Share this:Hi all, I am new to this Hi There, It's been two months since you posted this so I hope you are doing better. ...

Reply: Looking for feedback on Remicade infusions

I have been on Remicade infusions for about nine months. I get them every six weeks. ...

Posted by CrystalLarel

1 Reply | Reply | Watch This DiscussionReport This| Share this:Looking for feedback on Remicade infusions I have been on Remicade infusions for about nine months. I get them every six weeks. ...

Reply: Newly diagnosed just need to vent

RA just sucks. There is no other way to say it (well I'm sure there are but that's...

Posted by CrystalLarel

RA just sucks. There is no other way to say it (well I'm sure there are but that's just not how I talk). I have good days and bad days not just with pain a inflammation but with my mood. I seem to cope better on some days than others. It's normal, sometimes it's nice to know it's normal. It's so hard to have a disease with so many question marks on top of the pain. What meds should I take, why don't they work, what are the side affects, long term damage, what are other options? Why do I hurt more some days than others? What is it that makes me hurt?? What makes me feel better? I could literally go on and on. The important thing is to cope. Rely on those who love you because you will carry them in other ways in the future, that's love. My husband is a saint, we have a 16 month old baby and he woke up with her because I don't take pain meds at night, it hurt too much. I'm missing out on motherhood...I didn't visualize parenthood like this. I didn't visualize a lot of my life like this. I hate it when people say to count your blessings because sometimes I just don't want to. Most days I'm good about being positive, other times I have one heck of a pity party. I allow myself to feel down, I name my frustration (mad, scared, frustrated, etc). I've found that giving my emotional pain a name takes away its power. The last thing I need is to give my emotions control. I am in control of my emotions if I cannot always be in control of my pain level or inflammation. I have found these tips to be helpful for my emotional health. I'm also a fan of counseling, some people don't want to go because of the stigma associated with therapy but I've been and I swear by it. It's nice to talk to someone who doesn't pity you and can give you another point of view. I hope I've given you at least one helpful tidbit to give you strength for the emotional bad days. Remember, you are not alone, others are going through the physical and emotional journey you are on. Do something for your self! Watch that chick flick, get a mani/pedi, schedule that massage, go for coffee with a girlfriend, bake those cookies, whatever you do for YOU.

Take Care, CrystalView Thread

Posted byCrystalLarel

7 Replies | Reply | Watch This DiscussionReport This| Share this:Newly diagnosed just need to vent RA just sucks. There is no other way to say it (well I'm sure there are but that's...

Reply: Humira injection question

When I told my Rhumatologist how bad the shots hurt he asked me if I let them reach...

Posted by CrystalLarel

2 Replies | Reply | Watch This DiscussionReport This| Share this:Humira injection question When I told my Rhumatologist how bad the shots hurt he asked me if I let them reach...

Reply: Back / Hip Pain

Hi Kristen, I'm sorry you are hurting. I can relate, had unexplained back pain for...

Posted by CrystalLarel

Hi Kristen,

I'm sorry you are hurting. I can relate, had unexplained back pain for two years before my hands started to hurt and I finally got a blood test confirming arthritis. I am a 32 year old full time teacher and I have a 16 month old baby. I don't have time for pain but it's not up to me. I have been down the road you are on and I too felt like I was being treated like a "seeker" or someone who just wants pain medicine. I was actually questioned about my pill use by a nurse...in a waiting room! That violates my HIPPA Rights (pretty sure that's the acronym) pretty badly, I had to tell her that the duration of the pill and the amount I was given adds up and I should have been out! I had to break it down like I talk to a high school student. That is not how I want to talk to the people in charge of my health. I then went on to "doctor shop" and finally found a family doctor who listened to me. I now have a team of three amazing doctors who listen to me, I am after all, the only person who can feel my pain! My team includes: a family doctor, a rheumatologist, and a pain management specialist. My pain management doctor manages my medicine, thats all! I refuse to live my life in pain and if that means taking medicine then so be it. I've had five different types of injections in my low spine, none of them worked. I've had to try several types of RA medication to find what works. I've tried Himura, Embrel, and now I get remicade injections (pardon the spelling of the meds), I'm hoping that will work but if it doesn't I will continue to work with my rheumatologist to figure it out. That is on top of Methotrexate, Vitamin D, Folic Acid. These are just to treat the RA. I tried Prednzone and it didn't do anything for me (except make me fat and miserable...my husband asked when I would be off it). I ALSO take other pain meds such as tramadol, hydrocodone, gabapentin, Robaxin (muscle relaxer). DO NOT feel bad for wanting to live without pain. I am hoping the remicade will allow me to lower the other pain meds I take but until it does my daughter needs to be picked up out of her crib, fed, carried, changed, my high school students need me walking around answering questions, taking care of them, monitoring the halls, and I've got laundry, dishes, and a husband who can't do it all alone (though he does more than his fair share). I can't live the live I've chosen and be in pain, no one should have to! I have honest discussions with my doctors about addiction, and told them I'm not comfortable with that word. They told me I'm not n addict, I'm dependent on the meds and there is a big difference. Addicts lie and will do anything for a high, I want pain relief, not a "high." I am no where near an addict. I am honest with my doctor and we problem solve together about what works and what doesn't.I feel better after talking to them about my concerns with medicines, they know the research on addiction and actually do deal with real addicts. You are not an addict, far from it. Talk to your doctor about how you feel and you should figure out what works together. You should know that I started out with low amounts of pain medicine built up a tolerance to the medicine, it won't work as well and you will need more just to get the same relief. My doctors move different medicines down and others up, it's a science, but it works. I have a good relationship with my doctors and trust them. I have to.

Education is power, I encourage you to research chronic pain and learn all you can not only about drug dependency but your condition as well. You are becoming a part of a group no one wants to but we don't have a choice, learn all you can about it, posting here was an excellent way to start acquiring knowledge.

I hope I've given you some useful information even if it is the fact that you are not crazy, alone, or seeking medication. Take care of yourself. Remember you are your best advocate.

God Bless, CrystalView Thread

Posted byCrystalLarel

5 Replies | Reply | Watch This DiscussionReport This| Share this:Back / Hip Pain Hi Kristen, I'm sorry you are hurting. I can relate, had unexplained back pain for...

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