View Full Version : Sometimes it's the ups and downs that hurt the most
02-14-2011, 07:04 PM
Last week was one of the best weeks I've had in months and months. I could think straight and I had energy. I got so much accomplished and actually thought about the future with real plans. My son and I went out and spent Saturday doing fun stuff like we used to. It was such a blessing! It was amazing to get reacquainted with my much more grown up son! He was even bumped up to advanced English in high school! My house is in better order than it has been in months and the essential bills are all paid.
But I knew it was temporary. I think we all know we live in this special "borrowed time zone" when any day can be completely different than the day before. Yesterday I woke up with a heavy chest. By noon I was drowsing off even though I woke up at 10:00am. I've been a whole lot worse than this but I can feel the changes coming on. The breast bone between the lungs is so sore and my joints are lit up like Christmas. This is the worst my joints have been but then I did a lot more activities this past week.
I guess I just had to share what I know so many of us go thru - the good and the bad. Hopefully I'll start getting more of the good days. I think that will make the bad days a little easier to cope with.
Take care all!
02-14-2011, 07:14 PM
Oh it's oh so true, thanks for putting it into words, especially since I'm clawing my way back up the hill.
Peace and Tranquility
May the Force be with you
Lupus!! Don't Frak with me!!!
02-14-2011, 08:24 PM
Did you ever get the docs to figure out anything for you? Were you on any meds that got you to feeling better? If so, perhaps the dosages need some tweaking to get you back to the way you felt last week.
I grew up in Wood River, Ill and went to St. Louis Univ. I miss that city! How we loved Forest Park, the restaurants on Euclid Ave or down by the riverfront. I did my student teaching at St. Bishop DuBourg HS and SLU High. My first teaching jobs were at St. Louis Prep Seminary North and Brittany MS in University City. I also did some subbing in the Hazelwood District. I used to know the city very well, but I haven't lived there for over 30 years now - sigh!
02-15-2011, 08:19 AM
"But I knew it was temporary. I think we all know we live in this special "borrowed time zone" when any day can be completely different than the day before. Yesterday I woke up with a heavy chest. By noon I was drowsing off even though I woke up at 10:00am. I've been a whole lot worse than this but I can feel the changes coming on. The breast bone between the lungs is so sore and my joints are lit up like Christmas. This is the worst my joints have been but then I did a lot more activities this past week."
I completely understand this. I especially recognize that feeling of my joints being lit up like Christmas. You are so right that we live in the borrowed time. I think of it as the golden time or the rainbow time or the sunlit time between the shadows. Feel better soon my friend.
This is very true. I actually read something about this very thing and I know it applies to me so I will share.
I read that with Autoimmune diseases the thing in our body that says "you have done enough" doesn't work right. So when we get to feeling better we over do it because there is nothing to say STOP! Normal people we know when their body has had enough so they go rest, get some sleep, etc. We just go and go until we hit the wall that puts us back into a flare. Even though I know this I still do too much and then cuss myself because I knew better. Between the "STOP" switch and just the joy of having a good day/days I know I also try to get everything done while I am up to it.
Yeah, I think most of us go through this. Hope you feel better soon
02-15-2011, 08:58 AM
Wow serand4, I'd never notice your "St. Louie" location before... Go BLUES!!! lol
... I grew up in Wood River, Ill and went to St. Louis Univ. I miss that city! How we loved Forest Park, the restaurants on Euclid Ave or down by the riverfront. I did my student teaching at St. Bishop DuBourg HS and SLU High. My first teaching jobs were at St. Louis Prep Seminary North and Brittany MS in University City...
Ah yesh, St. Lou U... Too expensive for my wallet, but I sure did like that place (*very* pretty co-eds - lolol). I went to Flo Valley... Forest Park was right across US 40 (now I-64) by St. Lou U Hi-skrul, where my brother went in what? 1975-80?? DuBourg was the arch nemesis of Mercy High, where I went from 69-74. It was bulldozed quite a few years ago (and DESERVED it... lolol) - ah yesh, good times, good times...
Sorry 'bout gettin' off-track there serand4, but three St. Lou folks on this here little board... 'Course, don't ask me to drive around town anymore - I get lost BAD anytime I'm there anymore! Whatever in the world they do with some of those streets is beyond me...
02-15-2011, 01:59 PM
Hi Jmail - You and my dad could go on for hours about the street layouts! But I can get lost in a paperbag.
Marla, I am still debating on Wash U. and my Rheum D. is with St. Louis U. I haven't made a choice on how to go forward with my meds or my doctors. I absolutely know I have Sjoerns and even though my numbers don't reflect it, I'm sure I have Lupus. I need to find a hemotologist due to the blood clots and wildly fluctuating INR, also recommended by my Rheum. I'm not currently on any Lupus meds except Prednisone but I take a ton for fibromyalgia and pain. I think right now I'm just overwhelmed but not in denial. I just got medicaid (happy dance!!!) so now I can look around and start making some medical appointments and sorting through all of this. There are times I'm in so much pain in my abdomenal area, I get scared that it's either my kidneys or liver. But then I have to do a reality check and realize that pain comes with these disorders and not everything is going to kill me.
I have to say, I'm absolutely exhausted today. I'm sure I could have slept all day. I feel bad that my son will walk in from school and know that his mom isn't going to make a fancy dinner (I owe him one) but he'll adjust and we are blessed to have plenty of food for him to choose from.
You guys are wonderful and so supportive and while I don't wish this on anyone, it's comforting to know there are others that have lived through this too and can understand. Since we have have some St.Louis supporters, feel free to pass along the names of good doctors. In the mean time, I need to meet with my pcp and see if he has suggestions. He's a smart guy so I trust him and maybe he'll put me on some meds to hopefully give me more good days like Marla said.
Take care, God bless!
02-17-2011, 02:45 PM
I haven't lived in St. Louis since 1981, so I don't know docs there at all. That said, Wash U has an incredible reputation as a research hospital and SLU isn't far behind. We went to school with some med students who took classes at both universities. You should research the rheumatology programs at both schools and try to get a doc that is associated with the one that you like.
SLU would have been too much for my wallet, too. Luckily, I happened to be a smart kid on welfare. I received a four year, full tuition scholarship, and had my choice of SLU or Wash U. The girl who was the runner-up was delighted when I chose SLU, since she was pre-med and wanted Wash U. I chose SLU because of it's outstanding Classics department. I'm glad for that choice, since I met my soul mate on the first day of orientation at SLU. How we loved our years there!
02-17-2011, 05:56 PM
Wow! a four year ride to SLU. You must have had some *good* grades! That is a very nice school, except for them Jesuits... lolol (I went to Catholic schools for my "lower" education)... (I was an "A" student in a "C" body, with an "F" attitude)...
02-18-2011, 02:54 PM
Yes, way to go Marla!! I got some scholarships for the Journalism School at MU in Columbia and thought I was hot stuff! Of course, I'm not using much of that knowledge now! I've always valued your input but I will be even more attentive now! Way to go, girl!