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Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 426
   Posted 7/26/2010 7:37 AM (GMT -7)   
I too have not been on in sometime, I hope everyone is doing well. Since starting cellcept in December I have been feeling fairly well and haven't been on the computer quite as much as I have been able to get out and do things a bit more. Well, Saturday we had my God daughter's birthday party at our pool and since I had been feeling so good I stayed out too long and over did it. I have been able to spend limited time in the pool this season, but I always take precautions, plenty of sunscreen, don't go out in peak hours when the sun is intense, wear silly hats while swimming, you get my point. But for some reason I thought I was super woman on Saturday, I stayed in the pool with the kids the entire time and while I used sunscreen I didn't want to wear my silly hat in front of people whom I didn't know. The kids were having so much fun a lot of folks ended up staying several hours later. I guess what fooled me is it was a fairly cloudy day (trust me I know better as the UV rays are just as intense with clouds), but I was having such a good time and actually had a few hours of feeling "normal".
By Saturday night I had a headache coming on, then I woke up yesterday morning with a horrible sore throat, massive pain in my chest, mainly right rib cage and simply have no energy! One would think after living with this crazy disease for over 14 years I would learn, but that feeling of "normalcy" still draws me in every now and then. So, not only is my body rebeling from my outting but I'm in a bit of a funk as well as I was quickly thrown back into what has become my reality of limitations. Sorry, didn't mean to come here and whine, just needed to let my frustration out! My family is super supportive, but when I do things like this they always say "you know better why did you stay out there?" Things of this nature. I know you all can relate where they can't in this situation as they have no idea how badly I just want to live a normal life and be able to do things without having to pay the consquences later, like any other person my age.
So, here I sit in bed, unable to do much feeling sorry for myself once again! I hate pitty parties, but it seems I'm throwing myself one today!

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 7/26/2010 9:25 AM (GMT -7)   
Hey Melissa,
Can'tsay I blame you for wanting to just have a fun day with your family and have what you think is a normal day.  It's like people who go out an drink too much, and they know that they are going to pay for it the next day, but they are having fun at the moment and don't want it to end (of course their mind is impaired as well).  We all do the same thing from time to time, whether it be in the sun too much, over exercise, don't get enough sleep or whatever.  My husband always tells me that I overdo it alot, but that is how I've been for as long as I can remember.  I was always very active, Type A personality, always getting involved with things that pushed me too much, but I had a hard time saying "no".  Especially when it came to school related functions with my kids.  I was PTSO President for 8 years and was on the board ever since my one son was in kindergarten and he will be 20 in September.  I took on more and more projects each year, taught piano after school, went to all my kids sports games, plus took care of my neighbors needs as well (mowed lawns, took care of plants and animals) and did the normal daily duties of keeping up my own house with what time I had left in the day.  I can't help but think that maybe if I would have slowed down a bit I might not have triggered the disease to become active.  My rhuemy says I did nothing to bring it on, that it is is my genes, but when I was diagnosed in March of 2009 I had a year prior to that of complete stress, both physical and mental, and I think my body just caved in.  I try to tell other moms that I see that are at their wit's end with their schedules to pay attention to their health and that it is okay to say "no", because let's face it, you and your family will pay the price when you fall apart.  Those individuals who talked you into taking on more and more responsiblity will find someone else to do it when you become incompacitated and can't even get out of bed.  Boy, I guess I'm on the pity pot too!!  Anyways, I hope you feel better and I'm sure your god daughter had the time of her life with you and those memories are important to create.  Hope tomorrow is a better day!
Hugs and Angels,
DX- sle and carpal tunnel
RX - plaquenil, prednisone, etolodac, lisiniprol, hormones and lots and lots of vitamins

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 7/26/2010 10:20 AM (GMT -7)   
Oh Melissa, I understand completely! I went to my daughter's college graduation KNOWING that I would likely pay for it later, and ended up in the ER with severe chest pain the very next morning! It's just so AWFUL that we can't do the simple thngs others take for granted....

I hope you feel better soon!
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 426
   Posted 7/27/2010 4:34 AM (GMT -7)   
Thank you ladies for your kind words and support. Lynnette, you put it in perspective, I never thought about it, but I guess when we do silly things like this as lupies it is simular to our younger years when we used to go out and party too much even though we knew we'd pay for it the next !

Missing the simply things in life.....

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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