How is everyone?
Hi Joonie,
I'm having a bad day. I dropped my Humira last week just as I was about to administer it and even though its being replaced, its coming a week after I was supposed to take it, the same day as my monthly refill.
My wrist is a balloon and my knees hurt.
That being said, I'm so glad I found a place to vent.
How are you?
Jennifer
Shall we answer this on a scale of 1 to 10, just like a pain scale?
Basically, I'm discouraged and confused. My whole body seems to me in some kind of major immune decline. All these experts are all going off in different directions and none of them with good news.
I'm so awfully tired and scared at all the possibilities that they keep mentioning. But then, the doctors give me scary outlines and then do nothing about them. I hate roller coasters and that's what all of this feels like.
Add in the disability fight and I just feel sunk. Sometimes, I so much want to give up and I know that I can't.
I really want to feel good. But they keep takng me off the meds that used to work because they are destroying my immune system. Now, it's nerves. Even the ortho seems to be on some unexplained tangent.
I'm so worn out. Is it the fighting? Is it RA? Is it FM? Is it the bone marrow/anemia? Or is it just plain stress?
This body is on a major freak out. And, for the life of me, I cannot seem to bring it under control. I've been plenty scared in the past. But not like this.
Sometimes, I wish I could just disappear. But then I wouldn't get to live the rest of my life and I want that. I have reasons to keep going. But the bad news just gets more and more overwhelming.
Tomorrow is my day with the neurologist. Hopefully, he will give me some answers other than he can't do anything to help me. I'm waiting for a call back from the Rheumy. I did a simple blood scan today and it showed severe inflammation in my sinuses. The rest of it didn't look so hot either.
How can it get so bad when I work so hard at getting better? And don't even ask about disability. That's got me beyond discouraged. I'm so sick. I cannot imagine how anyone can work with all this going on.
Maybe the doctors tomorrow will have some answers. On a scale to 1-10, 10 being the worst, I'm at a 9.
I would be so happy to hear that others are doing better than that. When I hear that people that I've come to care about are doing well, it helps me somehow. I think I'd do better if I could find someone that would help me coordinate all this.
Tell me it gets better and I don't need to be so scared.
Deanna, I don't know if it gets better. I don't know how not to be scared either.
But I do believe that at least some parts of it will get better.
For one thing, you're going to get that disability. You didn't get it the easiest way, but you will get it the harder way.
And in a few weeks you're scheduled to have those surgeries, and there's good reason for hope there.
And in your continuing desire for your life there is a strong spirit that I truly believe holds us together even when our parts and pieces are pretty ragged.
The sun keeps coming up and we keep being there to see it. The scary parts wax and wane. We keep putting one foot (literally or metaphorically) in front of the other, waiting for the sweet moments.
Aren't getting through the nights the hardest part?
Tangent - Sorry about you dropping your Humira on the floor, I know what it is like to miss a dose or 2 months worth. You will get your Humira in ya soon enough... then you will get to feeling better.
Deanna -Maybe that is what the problem is... you are working too hard at getting better.
I know when I tried hard to get better the worse I got. And then one day I gave up and just tried to cope, and things got much easier for me to deal with.
____________________________
Me, I am doing alright, could be a whole lot better. I have been laying about and "resting", as sitting up just kills me. I want to clean my house soo bad, but I do not want my shoulders to burn too, they are already stiff and painful. I am going to pay my RX bill and get my humira shipped to me and by wednesday I will have my Humira to take again. And then maybe I will feel good enough to clean and I mean clean my house. Get the bleach out and lysol and go to town.
Deanna - it gets better. It always does. When you are at the lowest of your lows, someone always comes along to pull you up. Wish I could be that person.Deanna,
What Katie said. You must hang on. We're hanging with you and we love you.
And I notice another message for you and all of us in Katie's signature line--Lifer.
Katie,
You poem is another one going in my journal (with your name, of course).
Every single word in that poem has a purpose. So tight and true.
And I love the extra meanings and nuance of "innocents."
Joonie,
I totally get how you feel about the house. It's like lying in bed for about a week without a shower, isn't it?
I'm so glad your humira is coming soon. You have to post and tell us when you get the clorox bottle out.
My burning shoulders wave--just barely--to your burning shoulders. Feel better soon.
Tangent, I hope humira is a fast-acting thing. I haven't made it up the ladder to humira yet. But I can imagine how nuts I'd feel if I dropped my medicine and couldn't have it right when I needed it. May you have a big relief when you get your shot.
Yeah, Katie... I can see what you are saying and that is kinda what I was saying in my own confussing way
When I was at my worse, hubby lost his good paying job, and we were literally broke, had no insurance, no money for me to see an RD nor any other Dr., we had a newborn that I had to tend to and I could not even wipe my own ass... let alone a baby's ass, we had to come up with money to pay for daughter private schooling, we had bills to pay, and I was worried about all of it, even though I could not get out of bed and had to have my husband roll me from one side to the other because I could not by myself or even call him to help me get out of the bed to go pee... I truely wanted to work and I had not worked for 6 years, and to some extent I thought I would be able to work, but no one hired me, wonder why?
One day I just "gave" up and everything I worried about worked out, not the way I wanted it to, but it worked out.
Deanna-I really, really feel for you. Oh my gsh to manythings going on in all areas of your life. Do you have anyone that you live with that can take care of you. Sounds like there are some things coming up soon that can help breing some relief for you.
And you have helped me so much by sharing things you've learned in regards to processes for filing for disability and other ways of possibly seeking help.
I know it's a rough time for you now, but sunshine is just right around the corner. hang in there and pm me anytime you'd like to chat or need a prayer.
Tara
You are all so great. Katie, loved the poem. Slept awhile and I feel a bit better and with that a bit more encouraged.
I got out of PT for tomorrow because of the fever and I think of it as a break. I just have so many things scheduled. I feel like a snowball in the middle of going downhill and screaming out, "How'd I get on this ride." Something similar to the last time I rode a roller coaster and screamed at the top of my lungs with full and hearty conviction, "We're going to die!"
Of course, we didn't and everyone had a good laugh, but me. I haven't been on one of those since.
You're right about I do have good things coming up. It's just threw me today when I thought I was going for a MRI and it was a nuclear bone scan and even I could look at and see thing were not right. And, knowing I have got inflammation going in my sinuses is very scary. When I had these problems before they scared me with the possibilitie, except now I can't take most of the medications.
Katie, really like what you wrote. RKGal, you always encourage me. Joonie, wish that giving up would work for me, but some how it doesn't. Tara, glad that I've helped you some. I know how hard it is for you and that's only what you tell us about. No, I don't have someone to help me. I keep asking for case managers. But something's got to give. Today, I just wanted to go to the door of the hospital and say, "Let me in. Figure out what's going on. I'm too tired."
Tomorrow will be better, I know. Morning is my favorite time. Life still seems possible in the morning.
It's been uncharacteristically cold here in the Valley of the Sun, and my body is not letting me forget it! My hands are swollen and look like oven mitts; that and other weird pains here and there are getting to me, but oh well.
Deanna, don't you live out here in the Phoenix area, too? Maybe this wacky weather is one thing that's bothering you, too...I know, for me, it's the ups-and-downs of the temp/barometer that gets to me. I'm better when the weather stays more consistent, even if it's the awful heat here.
I'm okay, though, 'cuz my boyfriend has come out from Boston to visit. He'll be here for a couple more weeks, until he has to go back for the new semester. We're making the most of our time together, so whatever pains I have, I'm working on ignoring them (until he notices and makes me rest, LOL). What a guy - he's the one who got me the Internet hook-up...I think I'll keep him!
Deanna, hang on to hope. I will be praying for you, too.
Then last night my house-mate asked to borrow some shoes to wear for a date this weekend. I dug through a dusty pile of beautiful heeled shoes and ended up so upset that I will never wear them again, piled up for the charity shop this morning so I don't have to look at them any more...
Despite all this I have read all your messages and my heart goes out to you. This is an awful disease and I hate what it does to people.
KT
Deanna, I am so sorry. Sending you lots of love and hugs. I wish there was something more we could do to help you.
Kathy, did I read that right you weight 178 and they want you to lose 80 pounds???????? That's just crazy!!! I am running about 185 or so and would be ecstatic to see 150 on the scale.
I am happy to say I am feeling a little better. I am still having lots of swelling but it hurts a little less. I am trying desperately to figure out what causes visible hand swelling and joint pain when your crp and sed rates come back normal??!
kathy, you must be awful tiny if he wants you to lose 80 lbs. Are you a shorty like me? Are these your grandbabies that you've taken in? I have trouble keeping everyone's lives straight.
KT, have they done a cardio workup on you by a regular Cardiologist? While all of that could by Costchronditis, you could have something more serious like Pericarditis. A cardiologist can only tell for sure if they do an echocardiogram. It is an expensive test, but highly necessary if this continues. I've had all the same symptoms with Costro, except it shouldn't make you so tired. Can you please get it checked out? Pericarditis is inflammation around the heart and is extremely serious. Costro makes you hurt, not suffer such fatigue at the same time. And your ECG can be normal. It can affect your breathing, but only during the time of pain. I had that happen and they can calm you down with slower breather if it is Costro. But if it is more serious, then that's not going to help. Sitting up and leaning forward helps relieve the pain of Pericarditis.
So if the anti-inflammatories are helping, it's probably no big deal. But I asked my Rheumy how I am supposed to tell the difference because it is hard for the Rheumy, the Cardiologist and the Pulmonolgist to tell the difference. He advised that if I've had a full workup (cardio-pulmonary) recently then I probably don't need to work about it. If not, I should get one done again.
The last time, it was blood pressure and water retention problems, but they thought it might be pericarditis or a blood clot in my lungs. So, if you don't get feeling better, get them on the ball.
Hope you do feel better soon.
I am only 4'10 so yes I am tiny, but the least I ever weighed was 104, in HS and that was when I was anorextic, eating nothing but coffee, lettuce and mustard. I look pretty good at about 140 believe it or not.
The babies age 1 and 4 are our grandkids. We have had the 4 year old since she was 16 months old, and the little guy for a little over a week.