Somewhere out there are a group of very brave people. My fellow warriors. They understand my reality. They understand that which I go through on a daily basis. They live it. And quite frankly, it is hell.
Today it was bad brain fog. light-headedness. Pain in my R shoulder, hip and knee. Stiffness. It took everything just to accomplish what I was supposed too. Stay on track. I needed support, but when the family came home, there was none offered. They took what they needed oblivious to the fact that today I don’t have anything to offer. Today I needed someone to help me. So even when you aren’t alone with this disease you still have days without support. Without just a little bit of help. Someone to talk too.
Tonight, it is severe pain and pain pills. And yes, this is a flare. I am always ill but I have worse days. Or is it just a constant flare that has worse days?? On comes the hot flash. Is it the meds, the RA or what? I am too young for those but I get so hot and sweat. Tonight will probably be night sweats too. Pain. Tossing and turning. Little sleep.
But I am not alone! I have you my fellow warriors. You are going through the same but yet different right at this very moment and you know what I mean when I say it’s the same but different. We may not be in the same room. We may have never met and may never actually meet in person. But we are there for each other. So in moments when I feel alone and need just one person to ask how I am and no one does, I turn to my web of online support. Or I write in my blog. And I try to reach out to you who is going through this hell with me. Somewhere out there is you. And I am here for you too. We are together. We are strong.
I can relate to your comment about not getting help from family. Especially from family during a holiday or get together. For instance, we have 2 cats. Need I say more? The dining table needs to be cleaned before putting things on it like plates, napkins, food, etc. I have been clearing the table and washing it down so everyone can eat without cat hair all over the place. This task tires me out and of course, causes more pain. I believe next time, I won’t do this and I’ll just eat at the clean kitchen table. Sometimes I feel like family doesn’t seem to care or have any concern about my RA. Except for my mom and sister, they have chronic conditions as well so they know what I’m going thru and now I know what they are going thru too. I hate flare ups and with the season changing I’m sure there will be plenty. I love fall, it’s my favorite time of the year. I just have to except the fact that it’s a love/hate relationship! I hope you feel better, and may I ask what dmard are you on? My NP is going to start me on prednisone first. I’ve never been on a dmard before. Take care and know you are not alone! Cindy
I have two cats too.
I am not on a dmard but I am on prednisone. My 2nd rheumie was not going to put me on a dmard until I come off the pred (which will take months with his plan) and he sees how bad it is and claims you can’t get damage without swelling which isn’t true. I just set up an appointment with my 3rd rheumie and hope she will put me on a dmard. The first one was eventually going to put me on methotrexate but wouldn’t make a diagnosis without a clear test marker or xray/mri damage. Well I think one of the things that hung him up was my high ANA. I have had 3 neg ANA since and the 2nd rheumie said he thinks UC Davis lab messed up on my test. If I were to go back to the first rheumie I would go back to a lab that messed up at least one of my tests (I had to redo one because the sample was to warm) and does bad record keeping and the list goes on. I am hoping #3 will not only treat me but be the one I can stick with since she is was Sutter and I haven’t had any problems with them. What dmard are they considering?
Same thing, methotrexate. I hear a lot of people have trouble getting treatment from RA doctors. What’s the use of them if they don’t treat you or treat you properly? When my first NP did a second lab work to verify RA 2 years ago, she didn’t put me on anything. ???? I don’t understand. It’s like if they can’t see anything than you don’t have anything or any pain. Frustrating isn’t it? You wait to get in to see the doctor, sometimes 2 weeks, sometimes a month. And all for practically nothing? If you have insurance that pays for all this, you’re very lucky. Insurance will not insure you for lots of chronic illnesses. Doesn’t make sense, an insurance won’t insure you because you’re ill.
Thank you! I agree. They have medicines that can help us but I keep hearing how dangerous the medicine is. The disease is worse! And even the ACR says if you start treatment with a dmard right away your outcome for the whole course of the disease (so your whole life) can be improved. I know the side effects so just give me the medicine! I am willing to take the risks. Very frustrating indeed. I do have insurance and know I am lucky. There are many with this disease without insurance because they can’t work. I didn’t realize they cancel on people too, but it doesn’t surprise me. We pay a pretty penny for it but some people have to pay even more. What really gets me is every thing you read says once there is xray damage it is too late to treat early and aggressive and yet so many docs wait for that anyways. It’s my body! Just treat me already.