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Thread: I go something like this.....

  1. #21
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    Hi Ashley,

    Indeed, SC to Washington state is a vast difference. Much milder weather there. Here it has both extremes. Hot and Cold. Really laid back here and tail gate driving. It is all good though. We have been here over a year, on and off for the first 6 months. First arrived prior to the house being finished, but there was a delayed so we waited 4 months more before closing. Our builder, well, nothing really good to say there...

    9 months, have you notice any difference in your symptoms? Please tell me yes.

    Keep well,
    Oluwa

  2. #22
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    Yes. Well, sort of. My platelet count is up to normal and I do have more energy than I had. Like I said, this was my first really bad flare (since diagnosis), so I think it is helping the daily pain. Today for instance, I'm a little sore, but I've been sitting in a chair for more or less eight hours. I couldn't ordinarily do that. Oh, and I wasn't stiff when I woke up today. I seem to have a lot more good days than bad, but ask me again in a couple of weeks because I'm just now coming off a flare.

    I do have days where I can go out with my husband or my friends and shop for an hour or two, or just walk around a park. I've also (up until this flare) been able to work out two times a week with a personal trainer. I'm not sure I could have done that before the plaquenil. I hear good and bad things on the boards about it, but I really have been able to tell a difference. It took three months for me to see any change at all whatsoever, so don't give up if you don't see a change yet. I'm heading home. I can't believe I made it till five today and I'm not even about to collapse. I'll check in later, but either way hopefully we'll talk later!

    Have a good evening.

    AB

  3. #23
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    Hi AB,

    Oh, that is good news, coming out of a flare. Hope it is so. And a good day at work, Yeah! Hope tomorrow gets even better....

    I do hope the malarial works for me. It gets old. I feel old. Older. I will wait patiently. I do notice some of the bumps are gone and some are smaller in the malar rash that masks my cheeks. Still pinkish red. My nose looks like I am a boozer without the big pores.

    The Ultracet at night helps me with the stiffness in the morning. I can unfold quicker and it helps me to sleep through the night. Then I roll over and pop another to start my day. Just two Ultracets a day. I try not to use more, but I am sure I will have to up it because of tolerance if the pain doesn't subside. I can bear it for awhile. But it is mainly the elbows, feet and wrist that hurt the worse.

    My tongue has been tingling lately, I would say a bit numb in the middle. Is that a nusiance affect of the malarial? What is it? I guess it could equate to have eaten something too hot. Or did I. Humm, now did I? I don't think so, my little buds aren't huge.

    Oops, need to log out...the dinner bell is ringing, my husband.

    Keep well,
    Oluwa

  4. #24
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    Hey Ashely,

    How goes life today?

    I can't begin to tell you how good I feel today. I feel so good, my eyes filled with tears. I haven't even felt this great when Lupus was hiding before. I am almost afraid to feel happy fearing it will end. You think it is the Plaquenil working? It has to be it. Heavens, I hope so. It is like listening for a pin to drop, feeling for what your body is doing..is it real...nothing to feel but a bit, a very bit of mild joint and muscle pain. That is it. For me, that is like 100%. Gosh, I hope I am not jinxing myself. That last flare was a doozie.

    When I feel better everyone can hear it in my voice even if I don't mention it. When these good waves come, and this one is the best in 5 years, I think my family and husband think I am Sybil.

    It is too weird, a good weird. Even my head feels clear. Gosh, do I go paint, sew, fly...I am tired of taking it easy. Oh, girl I hope you feel like this when your Lupus hides. I will say an extra prayer for you tonight, k...

    I hope all is good and your day of work yesterday didn't do a number on you.

    Keep well Ashley,
    Oluwa

  5. #25
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    Oluwa! I'm so happy for you. That is just spectacular news. Why are you even reading this? Go enjoy life

    The plaquenil does make me feel like that when IT is hiding. Work made me very tired yesterday, but I'm in relatively little pain so all is well here. I'm back at work today and feeling pretty good. I'm even thinking of taking a brief walk today at lunch.

    I understand the whole Sybil thing, sometimes I feel like her too when I am having a good day after so many bad. I can hear your happiness in your post. I'm just so thrilled for you. You should do it all! Paint, read, take photos, enjoy the outside! Whatever you can do, do it while you can.

    I'll be around if you take a break from enjoying everything full steam...

    I'm going to be mad if you do nothing today LOL, just kidding.

    AB

  6. #26
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    Hey AB....

    That is great work didn't wipe you out. I was wondering. Lunch time walk, sunshine...hope it will make your day ever greater.

    In the morning yesterday I felt just okay. No headaches, very stiff though and felt like my body was still mashed into the bed. Tried to unfold myself and it wasn't till late afternoon I felt alive. Weird. Like poof, the sun dried up all the rain and I blossomed.

    Started thumbing through my color chips, again for the gazillionth time...decided. I went to Lowes yesterday and picked up 2 gallons of paint. Wheatgrass and Burnted Copper. The Copper is for one of the guest rooms and the other is for mine.

    I woke up this morning stiff, achey..but it past to a mild form. I am taking advantage of this "feel good, love me, woohooo" period. I popped a Ultracet and the Chlor-timeton, just incase...and currently, I am taking a break from painting my Activity Room....the room with mounds of gee, will I ever get to it projects.

    I already cut-in the whole room and one wall down. Joy, joy, joy. I am not going to think about IT doing a sneak attack on me either.

    Yesterday night, I modified some outdoor cushions I bought a while ago. The fell flat from day one. So, I gutted them...insert new foam wrapped in..oh, gee what is it. The word...ah..ah..banting?..gee that doesn't look right? But anyway, and had sewn them back together. Four.

    Hey, does Plaquenil just decrease the flares and inbetween, when it is hiding in the bushes you have a better sense of well being? Does it minimize the symptoms when in a flare?

    How was your eye appointment yesterday? How is your back today?

    My husband flies out to NY just for the day tomorrow. Cutting back. He has been very kind, kinder I should say. Coddling. Checking in on me...maybe too much, but I won't complain. I prefer feast to famine.

    Break is up...

    Enjoy your walk...
    Keep well,
    Oluwa

  7. #27
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    Hello! I never received a notice that you responded to my previous post, so I've only just noticed you wrote!

    I just can't tell you how much of a pick-me-up it has been to hear you are doing so well! I am just so happy! Painting, that is very very cool. I was looking at some of my paint chips last night as well, maybe I will try to go buy the paint this weekend. I'm dying to get a fresh perspective on my room since I've been seeing so much of it LOL.

    So the plaquenil seems to reduce my symptoms a great deal. I had an incredibly low platelet count when all of this got started and now I am completely in the normal zone which almost never happens after it has dropped as low as mine did. My daily pain is fairly low with some days virtually pain free. This comes in waves though. I was working out with a personal trainer twice a week before this last flare and that was something I completely attribute to the meds because I very rarely had to cancel or reschedule. I wasn't missing much work and even working longer hours. I definitely had more energy, so I would say, Yes it decreases the number of flares. Yes, I have a much much greater sense of well being when it is hiding in the bushes.

    As far as reducing my symptoms during a flare, I don't know. I was in excruciating pain and had to be helped to the bathroom, couldn't stand for a shower or sit for a bath, so I had to do what my grandmother used to call a "bird bath" (i.e. soap and a wash cloth) Honestly it was pretty horrific, but like I said I've only been on the meds since September and it builds in your system, so it could get better. So I don't really have an answer for this...yet

    The word you are searching for is batting (I called my mother, because I couldn't remember it either )

    My eye appointment went fine. My Ophthalmologist was fairly annoyed that my Rheumatologist hadn't even suggested a vision field test or even mentioned that plaquenil can affect your vision/eye health. He recommends a vision field test every six months (covered by my insurance) to ensure that my eyes are healthy because the damage that can be caused by the plaquenil is NOT reversible so they have to catch it early. Many never have any effect on their eyes, but it is better to be sure by getting this test done (Have you had this? It is a 20 minute test where you have to click a little computer mouse thing every time you see a light on the screen? If this doesn't ring a bell, let me know and I'll try to describe it a little better than this.

    My back today is much better. I did take a tramadol this morning and again at lunch, but I have been phenomenal today considering how much pain I was in last week. I'm up beat and though I could take a four hour nap, I'm not even thinking of closing my office desk and taking a nap in here (I thought about doing this a number of times yesterday)

    My husband is also leaving Thursday to go out of town. He won't be back until Friday so I've put my mom on standby just in case. I'm actually going to her house for tea after work today. I haven't been able to do that in almost a month!

    If I don't talk to you later, have a wonderful evening.

    As a side note, I just want to thank you for everything. These conversations have meant so much to me and my mental health. I have to say I never expected to find this when I stumbled across this board.

  8. #28
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    Hello Ashley,

    Thank you to for talking with me. It makes me feel real. I have never met another with Lupus. Words on a screen can make life so much easier when you are ill, with someone that knows. I can use all kind of adjectives, metaphors but I think someone that doesn't have IT never quite gets it.

    It is great to be where one can say just about anything, without wondering...do they think I am a
    Hypochondriac? Lazy? Whiner? Gross?

    My husband rarely gets ill. Stomach like iron. BM's daily. Normal ones at that. Sleeps like a rock. All things I am jealous of.

    Isn't it crazy though.... can you believe it was like 2 weeks ago and I was worn out from pain, hope felt so far away. But here I am. Can the Plaquenil work this fast, 5 weeks? Do you think it is because I took all preservatives out of my diet? I ate pretty consciously as a whole before. Exceptions, I used to eat sweet cereal a few times a week, only because the healthy ones, Kashi and etc have wheat and I'd have ice cream, here and there. Okay and a chocolate bar once in awhile, Hersheys Plain. Now I cut out ham, beef and Ranch Dressing, powder mix. Increase the fruits to 4 daily, instead of fish 2 times a week, now 4. No rice. Chicken, scallops, crab, shrimp on the other days. Flaxseed, freshly ground in plain yogurt each morning with a handle full of berries. Soy milk instead of 1%. Vegetables have always filled my plate. I supplement with 2000mg of fish oil and a super B complex daily.

    I painted the whoooooooole room. I "use" to be able to paint up a room in an afternoon, this one..all day event. Ashley, this last visit from IT, I never realize how weak it has left me in its wake. My painting tools feel so heavy. I mentioned it to my husband and he asked why did I cancel the painter. It makes me feel apart of something than just to be apart of TV, couch, kitchen, bed and the porch swing. The feel good is worth the weakness.

    Though this morning took me 3 hours to unfold. My pain was different, like you described... I was sore. Probably because I hadn't lifted a thing in months and going up and down the ladder. My last wall, my arms and legs were shaking but I plowed through. I think I do have a herniated disk, just by the way my shoulder arm and hand feel. I know nerve pain from all my surgeries and I also I had Carpal Tunnel surgery 7 years ago. Popped 2.5 Ultracet, out like a light. Feel pretty good today. But I will keep it light.

    I can't take anything with asprin, or like Voltaren, Aleve, Motrin because I have GERD. I use to take an acid pump inhibitor but being on Plaquenil I had to stop. It interacts with the malarial I guess. I should do a bit of research on that, because times my esophagus burns something awful, I get hiccups after I eat. But hey I will take that burn any day, all day instead of a flare.

    I love your Grandma's expression. Bird bath, just too sweet. Me, when I was too ill to move and breathing was all I could do. Hells, I just let myself stink.

    I didn't have a vision field test. But with more researching we should have had a baseline test to see where our eyes were prior to beginning treatment with the malarial. Sigh, I didn't. But it seems like sometime, somewhere in my life I did one. I was an Air Traffic Controller in the Navy eons ago, perhaps it was there...hummm.

    You words on a screen makes me feel like I am not alone, alone with Lupus. Even though my husband, family ask, hey, how are you..it is just not same. Thank you for that. I am glad there is wehavelupus.com

    What do you do as a digital librarian?

    Keep well, hope you day at work is going good...enjoy tea at your Mom's.
    Oluwa

  9. #29
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    The whole room?!? That is excellent. I'm very jealous. I feel really quite well today. I slept through the night (only getting up once) which I think is a record. Tea with my mom was great. She and I are really started to get close again. We had some rough patches last year, but we are starting to have some really honest adult conversations (i.e. she treats me like an adult and I her, which hasn't really been the case in the past)

    My husband and I spent a leisurely night at home last night afterward and he left this morning to go on his trip. Everything is really looking up.

    To answer some of your questions, I started feeling better on the Plaquenil after about a month, but my exhaustion & some of my other symptoms were complicated by the prednisone. Oh wait, you are on prednisone, right? Anyway, the prednisone gave me a burst of energy (read as people thought I might be on speed) when I first started taking it, but quickly started wiping me out. I gained a ton of weight, started having terrible acne and really wild mood swings. As I tapered off the prednisone, things began to improve somewhat, but the mood swings increased as did my exhaustion level because my body was then going through withdrawal.

    I think that your improvement could be in response to both the meds and the lifestyle changes. If you want to test it though, add a little bit of food back with preservatives and see if you see a change. For the most part I eat healthy, lots of fruits and vegies, chicken, seafood, all natural ingredients, fresh herbs, ORGANIC, etc. I have however had some junk without it affecting my remissions. For instance in February I had cake at my birthday which my mother-in-law gave me and I ate more or less a small slice a day. It had absolutely no effect on my health. I'm not encouraging you to eat poorly, but there are things you might not have to deprive yourself of if you don't have/want to.

    Are you taking calcium? I take calcium supplements everyday because of the prednisone and my rheumy recommended that I continue with it even after the prednisone was finished. If you have switched to soy and don't take it, you might consider it.

    The comments you made about your GERD are really interesting to me. I had severe heart burn & indigestion while on the Plaquenil and the Prednisone. It isn't nearly as bad now, but they put me on Nexium for about a month knowing what that I was on the other medications and it really helped. You should look into the drug interactions because I've never heard of anyone not being able to take GERD meds with Lupus meds.

    It is pretty amazing how disparate the highs and lows are. I was in such a black hole about one or two weeks before I found this list serve and this last flare, even as miserable as the pain was, I still felt "normal" mentally and hopeful about coming out of it. It was excruciating and my husband and mother had to take off and take care of me and I did NOTHING, but I still felt like this wouldn't last forever. That is something that the plaquenil in combination with the Lexapro has done. My doctor thinks that as the plaquenil continues to build in my system, the lexapro will no longer be necessary.

    One thing I've been meaning to ask is how is your hair quality? Mine has gotten so dry it is like straw and I've never had that before. It is naturally curly, so it has always had a tendency to frizz, but it has never been course and now it absolutely is.

    Air Traffic Controller sounds pretty exciting! I'm relatively new to the library field, but as a digital librarian in my current position it is my responsibility to help my division organize all of their electronic information by creating standards and best practices, training on electronic organization and locating an out of the box program to meet their archival needs. I work for the State of North Carolina so our archival guidelines are very broad, but the information we produce has been amazingly ignored by the State Archives of North Carolina. Many of the people I work with are nearing retirement age and have spent their entire careers here. We are about to lose an enormous amount of institutional memory and there is currently no archive to even reference for the evolution of many of the agencies, programs, organizations or processes that are crucial for the continued progress of my organization. I'm the only person who does what I do and my position was only created last summer so there is a lot of pressure to get results, but also a lot of freedom to shape the project any way I see fit, because I am the only expert in my area in my agency. The downside is that I can get very very lonely with no one to exchange ideas with.

    I know that was a long and sometimes convoluted explanation, but sometime when I'm not at work, I'll explain more clearly why I was not specific about some of the job details.

    It is really great to read your responses. I know exactly what you mean about not having to try to pin down an exact way to describe IT so that others can understand. I don't have to come up with an analogy or a simile or a metaphor. I can just describe it, no matter how weird or gross or disturbing it is because I know you get it.

    I had kind of a funny experience today I thought I'd share. I only recently started telling people I work with that I have IT. There is a guy that has absolutely no social skills at all whatsoever and today he stepped into my office and said, "So what's wrong with you?" No preamble. No working up to it. Just a flat out, "So what's wrong with you?" So I turned to him and said, "Lupus. And you?" I've been snickering about it all day. It is so great when I have a moment of clarity even if it only lasts a moment through the brain fog.
    AB

  10. #30
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    AB

    Ugh...Do you have problems with logging in and posting messages? Sometimes I have to sign in 5 plus times before it will take. You? Hummm.

    I wrote a reply, it requested another log-in after I wrote it..then it deleted it. $@#*&$!

    Hey, I will write you another later today or this evening.

    Enjoy the rest of the day. Will this one go through...Yikes..now it is saying invalid session..trying again..test, test, test...
    Keep well,
    Oluwa

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