I haven’t been on much, because when I am not doing well I tend to become a recluse. I hate complaining and just try to deal with it all on my own. Unfortunately, I think I have reached my breaking point.
The Enbrel shots stopped working and pain got unreal. I cried at the thought of standing up or moving around at all. Wrists and hands got so bad, I couldn’t pick up a quarter or even open a darn bottle of water. I called out at work, and the doctor would not release me to go back. She strongly suggested I look into filing for some type of disability at this point.
My boyfriend is aggravated with me because of all of this. In his mind, I look just fine, and I can’t be that sick. Our relationship went downhill very fast. He will ask how I am, if it is anything but “I’m fine”, he changes the subject, starts talking to the cat or just stops talking.
I am scheduled to start Humira this coming Friday, but now I have swelling in my lymph nodes on the left side of my neck and down into the left side of my chest The swelling by my neck is so bad that it is pushing against my larynx. Making it difficult to breath or swallow at times.
I am scheduled for more blood work and CT scan of neck and chest. Also a referral for Hematology/Oncology. Rhuemy wants me to hold off on the Humira until all the tests have been completed. She wants me to just take the Methotrexate for now by itself
My mother died from Lymphatic Cancer, so I am getting a bit scared now.
Isn’t that just the way of it: you think you’re on the smooth and level and then chaos breaks out. How many times have we seen that, how many of us have been there?
You just keep coming here to get it off your chest, bobbi. We’re here to listen, and to help as much as we can.
Best of luck at Hematology/Oncology. Make sure you keep us in the loop, OK?
I always think that making pronouncements either way is bound to bite me in the butt! If I feel good and say so…whammo! I go into a flare. When I’m certain I’m never going to be able to go a day without needing several “rests” horizontally in bed and I complain about it…what do you know I have a good day.
You’ve been coping long enough to know that there’s no such thing as a normal day! So sorry for all your new tests and scans. I’ll be thinking good thoughts for you.
Don’t be a recluse right now, hang out with us please!
This sounds like a frustrating time, a painful time, a scary time. That’s just too much to deal with all at once without yelling and you can yell here.
@Sybil I’m not sure when the tests are happening yet. I think the thing that scared me the most is the doctor telling me if the swelling gets worse to go directly to the ER, so they can insert breathing and feeding tubes. All I can think is how on earth did things get this bad so fast…it’s only been 6 months since my official diagnosis.
I had an appointment this morning with a psychiatrist, and it sure felt good talking to someone that actually listened to what I had to say. And she agreed with all of you, that this is not the time to be a recluse and I need to reach out to all of you and her for support.
So glad you had a good appointment with the psychiatrist and that she’s offering ongoing support. Sounds like you’re being quite proactive in managing this difficult time.
The tube scenario would scare me too. Let’s hope it doesn’t come to that. Glad you’re talking to us too!
We told her to say that. LOL Seriously, bobbi, it’s when you are feeling like curing up and crawling under a rock that you need the support most. So come here and chatter.
I’m wondering about your screen name. Tell us about that!
I am the mother of three boys. I raised the youngest two on my own for eight years, and even though times were tough, they were the best eight years of my life. It was all about me and my boys during that time. Hence the screen name - bobbiandboys!!
They are all grown up now, and married. The oldest is 39 and lives with his wife in Las Vegas, Nevada. The middle one is 27, and is stationed in Fairbanks, Alaska with his wife and two kids. They are expecting their third child in May. And my youngest is 24, and lives with his wife in Pensacola, Florida. I miss them very much!
Not feeling very proactive. I keep weeping, not crying, weeping. I sit down and get busy with something to keep my mind occupied, and the tears just streaming down my face.
Then I think, well maybe I just need a good old fashion cry. I play the music that always trigger a good crying jag, but it doesn’t work. So, I go on doing something else, and sure enough the tears start rolling down my cheeks again.
I don’t like this feeling at all. I always try to keep an upbeat, positive attitude, but I am finding it very difficult to do right now.
You seem to be hanging on in there doing all the right things though. In my book a good cry doesn’t do any harm and may just do some good. I can so understand that.
Seconding Sybil’s sentiment. You don’t seem to be, despite your assertion, just wallowing in it - you are being proactive. Being sad or a wreck doesn’t negate that fact.
Keep using us and your psych as needed, because, as has been said, you’re not alone in this.
Oh, bobbiandboys, I love your screen name because it’s all about you and those three boys–how SWEET! The loves of your life!
Ugh, how crappy you’re feeling–no worries about venting here–that is what this place is for! We all have our bad times and these people are right here to help you through that! Nobody else seems to understand except those who have gone through some of the same things you’re going through! And you do have a lot on your mind! I hope things improve quickly and you get the Humira…so sorry Enbrel stopped working for you!
We must be in the same age range–I have kids in their 20s and 30s, too…good luck with Humira and don’t be a stranger here!
Well, my CT Scan of my throat and chest is tomorrow morning. It took two weeks to get the appointment, and during that time the only medication they will let me continue is the MTX and prednisone. The inflammation in my ankles, wrists and SI joints is kicking back in…argh! The Humira pens are sitting in my fridge waiting for the okay to start. Hopefully by this time next week I will be able to start it.
I also had a couple of visits with a psychiatrist, especially after my weeping episodes, and she has prescribed Zoloft. We’ll see how that goes. I’m not a big fan of those types of drugs, but hate crying all the time even more.
Good luck tomorrow, will be thinking of you. I know this is ‘just’ the internet but what you’re going through has been on my mind and I’m hoping that it’ll all go well. Don’t know what Zoloft is but any port in a storm eh?
And I hope the Humira comes out of the fridge very soon!
I know two people on Zoloft and it works well…I think it’s a sort of anti-depressant/anti-anxiety pill…it’s real name is Sertraline. My kids tell me I should be on it because of my anxiety, but I’m in denial, so that’s that.
Bobbiandboys, I hope everything turns out okay–good luck!
Sorry for the delay, but I am dealing with the VA Medical Center and nothing moves quickly. CT Scan results were negative. Not sure what is causing the swelling, but at least it is nothing serious.
Doctor gave the okay to start the Humira…Yay!!
Vegas, Fairbanks and Pensacola … and Mom’s in Delaware. Couldn’t they have spread themselves out a little more? LOL I can imagine that you miss them! How often do you get to see them?
