I'm sorry you are feeling like this, Lori.
This disease really needs to be researched more. It's amazing how the pain and damage varies from hour to hour, let alone day to day. Not only do we have to deal with physical changes and pain, we have to deal with emotional changes and pain. It really digs in and grabs a hold of us in ways a "normal" person would/could never understand.
You are lucky you have an understanding boss and family because having a good support system is important :)

So sorry you are feeling like this, but we all understand, because we have been there. I had a really bad few days over the holidays, so much so that I was afraid the Humira was no longer working for me. And I was terrified. That drug has changed my life.

Once I started Humira, I saw noticeable improvement almost immediately. All of my swelling and nodules went away within 6-12 months after starting Humira. I was so happy to see wrinkles on my hands again;)

For me, the worst part was trying all of the medications until we found what worked. My pain and fatigue are now manageable. It just takes time to figure it out.

I hope you have a great doctor. They are the key to success with this disease. Stay on top of your tests and symptoms and be fully engaged with your doctors, and it will all come together. I know it is hard to have patience when you are in pain, terrified, depressed and worried about your new normal. I hope it helps to know that you are not alone.

Keeping you in my prayers, Lori, for better days ahead!
Debbie

Patience and faith - trust in your doctors, hold on to your hubby, eat what is good for you, get under the heating pad when you need, focus on a good book or a distraction if you can

All of this "stuff" can be over whelming. The numbers can seem devastating and dreadful, but you are a survivor - small steps toward feeling better is a path forward.

Sit with hubby and read and help each other understand how you feel and what he can do to support

I read so much fear within the DS group - we are all afraid -

For me, small steps, patience and MBDs2

So sorry you are having to deal with this "stuff" - that we all have to

Peace this night to all
Bluedogs2

Wow Lori, you have a lot going on. Is that our insurance company's criteria for getting on a biologic is to be at max of MTX? I know all companies are so different which is very difficult for all of us. I hope you can get some relief and I am glad your father is recuperating well. Take good care of yourself.
Sarah you are so right when you say normal people do not understand RA and how RA truly affects us. Best of luck to you.

Lori, I can go for weeks/months of being in remission to waking up and both elbows and wrists flaring so bad that my husband does the bra and the hair for me. They can disappear almost as fast after I remove the new trigger.

The unpredictability of this disease is the hardest for us type As to deal with. It's hard to make our plan A, plan B. ..etc

Hope it gets better soon:)

Lori

good luck loading your DMARD and researching your biologic with your doctor.

this is the next step.

you'll get there. it's just a disease that exacts a lot.

i hope your family makes you smile just once today and that you have a 10 minute reprieve, ok?

hang in there, your treatment plan will progress

how is work going for you? is it a distraction or a burden?

Ros

No need to apologize for not being around-you post when you need to and someone will always be here! I'm very sorry to hear how you're doing...our bodies seems to have a sad sense of humor at times-forgetting it isn't in control but we are! Just gotta get things balanced/under control and the health and feeling better will return.

Lori-so sorry to hear that you are having such a rough time. I've found that I've had to be very assertive (my husband would use another term!) with both my rheum and the nurse in charge of getting all the approvals. I also made some dosage changes myself. I've been on 15 mg of mtx for 4 months along with 5 mg of prednisone. Have weaned off of the pred twice, but had to go back when flares/pain increased. At my last apt (6 weeks ago) we discussed possibly upping the mtx to 20 mg and adding a biologic. I wanted to try Orencia... but my Merry Christmas from Blue Cross was a denial until we tried Embrel or Humira. Cried for 15 minutes, then called and asked them to try to get approval for Humira. Meanwhile... flares were crazy, so on my own, I upped the pred to 10 mg and mtx to 20. Other than next day fatigue, I've had no side effects with the mtx. After not hearing anything from them, I called Monday, told them that I had changed the dosages and would need new prescriptions and pushed on the Humira. The next day, they had me come in for the tb test and I got approval for the pres changes. Hoping to start Humira next week. Stay on the staff at the office-sometimes it seems to be the only way to get things done! Hope you feel better soon. Sorry to go on so long, but now I've gotten my vent out too!
Patrice

Lori, I know all insurance companies have their own rules, but I have never been above 15 mg of MTX and have been approved for biologics. You may not have to go to 20.

I see you are in the Dakotas. The winter weather there would give anyone problems, much less someone with RA. Sorry you are having such a bad time. Can't imagine dealing with this from a Type A perspective, being about a Type B- myself! Every morning is a fun new game: let's see, what doesn't work today?

altoclef i like your perspective almost always.

today there was no chance of dressing without the left arm but I did wear a blanket with flair and a gorgeous clip. and i wore my rocket dog slippers. i have also asked to spray dye my hair ends purple for the surgery monday so it will blend with the brace. or rather not blend. the idea is to frighten or embarrass the kids to no end since i am in this pickle they might as well enjoy some levity over it. tomorrow the hair is getting non ceremoniously chopped off or maybe i'll have a chant or two while it falls on the ground.

Ros

@ros13

You are and will be in our prayers

The Blues

Thank you, thank you to everyone for your kind comments and support. Everyone in this group is a life saver!

I am feeling a little better about my situation today. I guess I just needed to have a little freak out before I got my kick a** attitude on. I upped my MTX dose to 17.5 mg today. Visited with my boss and she is behind me 100% in getting the show on the road.

Ros, I hope your pain is not too bad right now. I also hope your surgery goes well. I will keep you in my thoughts until we hear how you are doing afgter Monday.

Blue Dogs, thank you for reminding me that I am a survivor. I will survive this and make it work on my terms, it just may take a while. Your words are always so kind and soothing, thank you.

Sarah, I hate what this disease does to all of us. It so hard for us to make other people understand since it is all mostly invisible. That's what makes this group so wonderful. We all get it and understand.

Debbie, I'm glad to hear a biologic is hekping you so much. I am hoping that once I can start on one it will help me too. That's why I am pushing to get the process going. So far my rhuemy is amazing! I was just diagnosed in OCT 2013 and she has been aggressive with my treatment. We just need get me at a therapuetic dose of MTX for awhile and see what happens. I have copies of all my labs and clinic visits.

Patrice, I am very assertive and educated about my disease. I research and research and ask questions. Luckily, my rhuemy appreciates this. I am just have trouble with the patience part of all of this. I am a fixer and I want it fixed right now! Of course, RA has another plan and is not afraid to show me this. This is where I struggle. I am doing everything I am supposed to and the disease is not cooperating. Drives me nuts!

2scicrazed, I'm glad that you get some relief from this beast. For now, mine likes to move around from day to day. Sometimes hour to hour but it is always something.

Christine, I am not sure what the requirement from my insurance company is at this point. I just haven't had time to deal with that yet. The need for a biologic was just brought up on Monday. I was thinking it was a few months off before that decision was made but 4 days changes a lot in a hurry. My rhuemy did explained to me that most insurance requires a patient to be on a stable therapuetic dose of MTX for 8 weeks or so before covering a biologic. I will have to call my company Monday and find out.

Autoclef, I think my rhuemy usualy maxes doses out at 20 mg and then feels comfortable calling MTX a failure. Yes, the weather in the Dakotas can be killer. Thankfully, I am in western SD where it is not quite as bad as other parts. However, it does change faster than you can shake a stick. I'm not sure if it is the cold or the rapid changes or both but I feel it everyday.

Annettear, you are so right about our bodies having a sad sense of humor! Unfortunately, it is making me lose my sense of humor right now. I normally try to stay positive and see things with humor but this is kicking my behind in that department. I don't like it when I am that way so I will pull my boot straps and smile.

Again, thank you to all of you for the kind words and support! I know that you know how much it means.~Lori