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Epiphany on My RA

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Posted 8/22/2009 7:15 AM (GMT 0)
I guess I didn't realize just how sick I actually am until today. I'm really very sick and it's freaking me out!!! I was diagnosed with RA about 3 months ago. I've been feeling better on 10 mg of MTX and 15 of prednisone, and my joint pain was virtually gone over the past 2 weeks. My remaining symptom is this terrible fatigue. Well, I had my 2nd IV of Remicaid in 2 weeks on Wednesday, and since it's supposed to work over 4 weeks, it's like I have a double dose in my system. No big deal, I thought. Well, Thursday afternoon I woke (I sleep 12-14 hrs/night) with a terrible sore throat so per my rheumy's orders I started taking Leviquin (an antibiotic).

I have not felt so sick from the inside out ever!!! It's like there was a war going on inside my body, in my cells, and I don't even have the words to express how awful it felt. The best I could come up with was "Icky" and that's not even close. I had to meet my new landlady today to sign a lease and pay my deposit for the new apartment I move into next month, but that didn't take very long, so I came back home, put on my nightgown at 3PM and alternated between the couch and TV to my bedroom and the radio, feeling like "somebody just kill me". Not really suicidal, I just felt so darned rotten I wanted to stop feeling. I drank all the water I could, cat-napped, and ate bits of ice cream. Comfort was all I wanted. Just anything to make me feel better.

I'm finally starting to feel better. I was so out of it earlier today that I couldn't sit at my computer to write. I guess it was just a rude awakening to realize that even though I was starting to feel better, I still have a long ways to go. I think I was kind of deluding myself into thinking I wasn't really that sick, that I was the exception to the rule, and so on. But I'm not, and it just really s**ks that this is my reality right now. I think I've been in some kind of denial the past few weeks, as I started feeling better. I want to be well now, darn it, I don't want to have to wait until October when my rheumy says I should feel much, much better.

Sorry to rant and rave, but this is the only place I can do it and not feel like I'm being a giant wuss. Even my own Mother is getting tired of hearing how awful I feel all the time, and she's been my rock. I really need you guys/gals and the support I get here. I guess I just need someone to tell me it's going to be ok. Thanks for listening.

Post Edited (ladywriter) : 8/22/2009 4:47:24 PM (GMT-6)

Posted 8/23/2009 7:22 PM (GMT 0)
It gets better.
That is how I felt until we found the right doses of the right medications. I have now been symptom free for 22 weeks-that means the fatigue is gone too.
Good luck finding that combination for you.
Posted 8/24/2009 5:31 AM (GMT 0)
Sounds like one of my yucky flares I get on with the RA.  The fatigue is unbelievable.  The flares do wax and wane.  you will have your good days and bad until they find the right therapy for you and depending on how aggressive it is.  Enjoy the good days.  Rest and take care of yourself on the bad.  No stress or overdoing it when you do finally feel well.   you are being treated early enough for them to get control of this condition.

Feel better.

Posted 8/24/2009 6:42 AM (GMT 0)
"Sick and tired of always being sick and tired' sums up most days for me.
I agree with both the other posters, give the meds time to work and rest when you are able.
I know this is easier said than done ((HUGS)) to you ladywriter :)
Jo
Posted 8/24/2009 7:51 AM (GMT 0)
Thank you all so very much for your encouragement. It's just so frustrating when I never know how I'm going to feel. Every day is different, and it seems so unpredictable. I never know what to expect. Most days I sleep 12 hours, but sometimes it's 14-16, and then I'll have insomnia and get up after 5 hours and seem to do ok. I almost have to laugh at how unpredictable it is, like this life is a movie and I don't know if I'll get a comedy or a tragedy or something in between. Something I learned in AA 15 years ago was to take things "A Day at a Time" when times are rough, and honestly all I can do some days is make it through the day until bedtime. I just hope I can get this under control by the end of October, when my disability insurance runs out and I'll have to go back to work (that's assuming I still have a job waiting for me, what with the current economy).

Thanks again, very much for your words of support. Nobody else really understands what I'm going through, even though they try. I'm so lucky to have you guys/gals in my life. Hope everyone is well and having good days.

ladywriter
Posted 8/24/2009 1:48 PM (GMT 0)
I do understand how rotten you feel! It literally feels like you have the flu? That is where I am now and I went through two of the medrol dose packs, felt great while I was on those, even my GI issues were gone, now no more medrol and I'm back to hurting all over, and all I want to do is sleep and sleep. My family understands that I hurt, but they don't really "get" it. You can always vent here, we live this on a daily basis.  I hope you start feeling better soon.

Posted 8/25/2009 3:23 AM (GMT 0)
Hi Lady writer,

Just hang in there. The tiredness can be apalling but hopefully once all your meds kick in you won't be tired all the time. I think we all ride a bit of a roller coaster with RA, now I tend to really use my good days!!! Sometimes if it really gets me down I see a councellor, talking it all through helps me a lot! But the meds do help its a matter of finding that magic cocktail that works for you, so just keep going, ride the wave and enjoy it when the sunshines! Golitho

yeah

Posted 8/25/2009 8:21 AM (GMT 0)
The flu-like symptoms are mostly gone now, but I know the fatigue is pretty bad when I drink 3 double-shot energy drinks in a row and they don't do a darned thing for the fatigue. I might as well be drinking water. I guess I'll just have to listen to my body (it's being quite demanding) and rest, even though I have so much to do, what with moving on September 12.

Me and my furry family (2 kitties) are moving from a 2 bedroom into a 1 bedroom apartment, mainly to be on the ground floor and to save money. It's going to be $300 cheaper/month, so I can build up some savings for a rainy day.

I have friends who can help me pack, but I'd like to be the one to go through my stuff and decide what to keep and what to donate, and right now I don't even have the energy to do that. I don't want to just lay on the couch while my friend picks up things and asks me if it goes in the Keep or Give Away box, but it might come down to that. I just keep praying and putting one foot in front of the other, do the best I can, and hope for just a little more energy.

Today I ran out of energy after about 2 1/2 hours of running errands, grocery, etc. It's my 4th day on antibiotics, and I'm not sure if they're working or not. I initially had a sore throat, now I just have a ton of congestion that seems to be settling in my lungs, and that's not good, especially since I'm a smoker.

I basically know what I have to do. I have to swallow my pride and ask for help packing. And I need to quit smoking, or at least cut back. I just don't want to do either of those things because I'm stubborn and prideful. Dang it!!! I guess I'll just have to see what tomorrow brings. It could be a really good day. I'm going to bed thinking positive thoughts tonight. Thanks for your support.

ladywriter
Posted 8/28/2009 4:43 AM (GMT 0)
Ladywriter!!! You're obviously sick. Give yourself a break for a few days, recover then think about packing. I hate moving all that bending...even the thought of it is beyond me. Please look after yourself. You don't want to end up with pneumonia. Best wishes, golitho
Posted 8/28/2009 1:39 PM (GMT 0)
Golitho offered good advice! The sicker and more run down you are the harder it is to get back on track.  I know it is easier said than done but sometimes we must force ourselves to take some down time and rest, otherwise we are going to hit the wall.  Moving is physically taxing and when you factor in RA on top of it....I think it is great that you are going to call in some help, but I also think Golitho's suggestion of a few days off for some rest before you begin is a great idea as well.  I went on vacation for a week with my family and while I was there I averaged about 5 hours sleep a night coupled with daily walking/driving sight seeing trips in the sweltering heat so needless to say when we arrived home it was time for the kids to start school and we commute them in 40 minutes one way, and I've been flaring ever since. It is so easy for those of us with RA to over do it and end up in a flare.  If your friends are good friends they will understand and won't mind helping.  I know it is difficult asking for help but sometimes it has to be done.

Posted 8/31/2009 7:02 AM (GMT 0)
Well, you were right. My body had it out with my sheer force of will, and my body won. I have been terribly sick since my last IV chemo a bit over a week ago. I now believe it was the antibiotics that played a large part in making me feel so ill, as I've been changed to new ones and don't have as many adverse reactions. I've been sleeping a solid 14-16 hours/night, and have so little energy you could knock me over with a feather. Thursday, I was so ill that I went in to see my rheumatologist (after nearly falling asleep in traffic several times), and he said I had thrush, which is an infection of the throat.

He prescribed new antibiotics, and wanted to see me again today, after being on the new meds for a day, and on the way up to his office I nearly fell asleep again several times while driving. On the way home, I actually fell asleep at a stop light, and was awakened by horns honking, no cars in front of me, and cars going around me in traffic to get onto the highway. That really scared me, as I was using every bit of sheer will and strength I had to stay awake, and it wasn't enough.

I couldn't take my Saturday chemo for the second week in a row, since I'm on antibiotics again, and hope this doesn't cause me more pain during the week. I think with all the IV chemo drugs I have in my system that I should be ok. Only time will tell.

I had another doctor's appointment Friday, and realized that it wouldn't be safe for me to drive myself to it, so I had my father drive me, wait for me, and give me a ride home. I had to cancel a computer tune-up I had scheduled for later that afternoon because (1) I couldn't stay awake for it, and (2) I didn't feel safe driving to pick up the person and take him home, which I would have had to do since he has no car. I slept after the doctor's appointment, and completely forgot that I needed certain things from the grocery, so I called my folks and had them pick up things for me so I wouldn't have to go out. I did go out today briefly, but nearly fell asleep at the wheel again and turned right around and came back home, so I'm grounding myself for the next couple of days. And no packing, I'm just going to rest and try to get well. I slept virtually all day today, and when 2AM comes on, I'm going to take a couple sleeping pills so I can at least get back into the "Be awake during the day and asleep at night" mode, even if I don't wake up until noon, which I usually do anyway.

Thanks very much for your support, and for telling me things I need to hear.

I really overestimate my ability to do things, because (I think) I've been doing things on my own for so long that when I'm faced with a difficulty, I just put one foot in front of the other and do what ever needs to be done, no matter how bad I feel. I don't ever really know when to tell myself to rest, but getting honked at in traffic is a good reminder. I can't believe I was so sick and actually drove. But since my body won out over my sheer force of will, I will just rest and get to feeling a little better before I start tackling the moving projects.
Thanks, ladywriter
Posted 9/1/2009 3:33 AM (GMT 0)
How scary for you, falling asleep at the wheel, I cant imagine what that was like. Glad you have someone who can taxi you around.
Sounds like you are doing the right thing by taking things one step at a time now. I tend to use up all my energy while I have it, when if I kept conserving it I might get longer from my body.
Please dont keep overdoing it (easier said than done I know).
Jo
Posted 9/1/2009 4:40 AM (GMT 0)
Lady writer please take it easy, give that poor old body a break, hopefully the anti biotics will kick in soon and you'll start feeling better. I know its frustrating but just listen to your body and rest, we're thinking of you, golitho
Posted 9/2/2009 8:45 AM (GMT 0)
Dear Friends,
Thank-you so much for your support through this difficult time I'm having. I'm obviously still pretty sick. I slept the entire day today, not even getting up to take my morning pain meds, or any meds at all for that matter. I got to bed last night around midnight, and woke up at 4:30 this afternoon. I didn't even know what day it was until I went to get my meds for the day, and saw that the "Tuesday" pill box had not even been touched. I was in so much pain I could barely stand it. Between the chronic pain from the old auto accident, and the RA pain, I was a total wreck today until I got the meds in my system, and then had to wait 45 minutes for them to take effect. I'm going to start getting wake-up calls so I can take my meds and if I feel well enough, start my day a little earlier than I'm used to.

I have some sort of infection in my throat, whatever it is-my rheumy is treating it as a yeast infection in my throat which I've been taking 2 different meds for, and while my throat doesn't hurt anymore (progress-yay) I'm terribly hoarse, but I feel like I'm slowly getting over it. I just hope I can get over it enough to start taking the MTX again. It's been 2 weeks since I've taken it, due to infections, and my RA symptoms are starting to come back.

I see my pain management specialist (primarily for the chronic pain from an auto accident over 10 years ago) tomorrow, and although the meds I'm on for that pain (oxy-morphone) have very little effect on my RA pain, he is an expert in pain management and may be able to give me some ideas/meds for more effectively dealing with both my pain issues. Having excruciating pain coming at me from 2 different directions is very disturbing.

One of my girlfriends volunteered to help me pack for my move both this Thursday am and all day Sunday, so I'm taking her up on her offer. She is so sweet, and knows how hard it is for me to ask for help, so she just up and volunteered. I really have some great friends, both online (this means you) and in person, and so I consider myself very fortunate. I'm also fortunate to have such good doctors, and just in general have much to be thankful for.

I'm getting the keys to my new apartment tomorrow, but the landlady's only charging me for half a month's rent. She knows I'm sick with RA, because I explained it to her when I was late for an appointment we had set. I wasn't trying to use it as an excuse, but wanted her to know that my intentions were good, but that I sometimes have trouble getting places on time because I sleep so much, I move slowly, and there's very little I can do about it. The solution I came up with as far as making appointments I can keep with her is to call her in the morning and set the appointment for later that day. On days that I have doctor's appointments, I have found that getting a wake-up call, even if the appointment's in the afternoon, is very helpful, because no matter how much sleep I get, I always want more. This strategy at least gets me up, and once I'm up I can stay up and make it to my appointment on time.

I really can't wait until we get this fatigue under control. It seems to rule my life right now, and I'm sick and tired of feeling sick and tired all the time. I know I need to be patient and let the meds do their work, but the waiting is hard. Thanks again very much for letting me vent and for being so supportive.

Hugs and Kisses, ladywriter
Posted 9/3/2009 11:37 PM (GMT 0)
How did your pain med appt go?
Glad you have a friend to help with your move, its hard enough to do, but when you are unwell even harder. Good luck with the move and try and rest as much as possible.
Jo
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