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Comment by viki hagan on June 25, 2012 at 11:10am

Thanks, Karen.. for the compliment and the good wishes. A lot of people felt the way you initially did when I started getting sick.. there are only  few people in my life now, and they hung around long enough to realize, like you did.. no one would fake this, it's too stupidly horrible.. but it's one of those invisible illnesses, we look fine, but we aren't. So it goes.

Comment by Karen Lightman on June 25, 2012 at 9:55am

These are great Viki! I've been reading the "novel" you and Rogue have been writing. I had a friend with cfs....and for a while I thought she was faking it to avoid me. My feelings were hurt. After time....time hanging out with her..I began to think "there's no way she's faking it, who would fake this?". I'd see her want to do things but really felt too bad or tired to join in on some real fun. Things that nobody would want to miss out on.  This was all the time. So we just started bringing the party to her.  Later she was taken by cancer and is sorely missed. Reading your posts made me think of her....a great scrabble player she was! We got addicted to that game...along with a couple of beers : ). 

I hope both of you guys feel better more often than not.

Comment by the rogue quilter on June 24, 2012 at 8:34pm

ok...between you and my chat friend you two have me sitting here laughing like an idiot...and nobody around but me. dh doing pretty good today so i am on sabbatical so to speak lollollollol...catching up with letters [my idea of email....keep it short mom...yah right son a'mine :)) ] and chatting which we haven't had a chance to do for quite a long time.

but yah...sometimes ya just gotta choke to hold the retorts and derisive snorts at the things that seemingly or so they say, intelligent people come up with. right? lollollollol

Comment by viki hagan on June 24, 2012 at 7:55pm

I'm a real people person, can ya tell? lol. My favorite incident was with a neurology intern.. all my doctors are at the University of Missouri hospital.. I've suffered from chronic migraines at the rate of one or more per week for around 5 yrs now.. so when this whole tired and miserable thing showed up, the neurologist was one of the first visits.. I go in and the hottest, I mean hottest doctor I've ever seen comes in.. he's the intern. I happen to be getting a pretty bad headache by the time he gets there for the exam and I tell him this when he starts his questioning... I am 40 yrs old, I am not skinny.. this kid actually says to me, you know you can get a headache from not eating right?    I did not know which smart ass remark to go with they came so fast to mind, lol. I just stared at him for a minute and then said.. yes, I believe I heard that somewhere before.

It's right up there with all the people that said, have you had your thyroid checked?? Well, let me see, 7 or so specialists, a blood test that took 7 pages to spew out all the info, repeated for each doctor.. undoubtedly someone has overlooked this, I will bring it up at my next dr's appt.
Gotta love it, lol.

Comment by the rogue quilter on June 24, 2012 at 6:43pm

lollollollol....ok...that is all i can say is lollollollol...been there so many times over the year. and i try, i really do ...to be caring and solicitous and say....really???? oh!!! well, maybe you should tell your healthcare person! and change the subject.

doing good...i don't get upset anymore ....lollollol...smirk!!!

Comment by viki hagan on June 24, 2012 at 6:36pm

yes, I do so love it when someone says to me.. oh I know just how you feel, I have been so tired lately.. really? did you sleep for 18 hours yesterday too and today barely have enough energy to stay awake let alone do anything???? I want to smack them.. so like you I just really don't tell people anymore, a waste of breath. The worst thing for me is not being able to take off and drive wherever I want, I used to just load up the dog and head off down the highway, now I'm lucky if I can make the two hour drive to St. Louis where my boyfriend lives.. and the mess that my house is now, I used to be so neat and tidy, lol. The boyfriend offered to hire me a maid but I just can't do it, I hate strangers touching my stuff!

I totally understand about telling those close to you over and over and over again why you're tired, lol...they just don't get it that it's not going to end with a good night's sleep like it does for them.. oh well.

Speaking of ipads, I don't have one but my sis in law has a new kitten that likes to play some fishing game with her, apparently you have to tap the proper fish to do something or other and the kitten seems to love trying to 'catch' the fish, lol. It's pretty entertaining to watch.

Comment by the rogue quilter on June 24, 2012 at 5:47pm

when i was in nursing school, cfids or cfs as it was called then was a term like schizophrenia...if ya didn't know what it was then you labled it with one of those dx.

and like you, i don't think people take it seriously. so i don't tell them anymore. i just say...oh it is something too wierd to say or explain, so i just call it my forever flu. if i would say the cfids term yrs ago i would get this...'oh ...i am tired all the time too, i bet that is what i have!'...yah right...tired...what an ineffectual word that is.

dh is supportive, but i used to send him a lot of angry emails in the early yrs when he would call and say...why don't you feel good today? why couldn't you sleep last night? why are you hurting so much today? so i would send him the cfids .org pages again....and again....and again...and i don't let him tell my mil who is living near us now & who wanted to come 'help' when he was first home from surg. i was so exhausted fr hotel stay, hosp doings, and getting him settled in at home...i did not need a house guest to clean for and after cook etc and all the social things that go for houseguest that likes to sit and watch tv and visit. but she came anyway!....lollollollol

but getting thru it...have asked her to stay home now for a few weeks while i get him up and walking more and using cane etc. i just can't do more than i am,  with taking care of him and this place and all.

i want to play on pc or ipad now and again dur my days too!!! esp the ipad...what a great toy...i can lay on the couch or in recliner when feeling poorly and still inet chat etc. don't have to climb the stairs and sit in chair at desk ...:))  ....kitties like it too...got one 'ol guy that thinks the ipad is great nappy spot...another little 'ol lady kitty that thinks that that ipad thing is even better than knitting or quilting!!! lollollollol

Comment by viki hagan on June 24, 2012 at 5:01pm

I know a few, other than me.. it took two and a half years, 7 specialists and more tests than I care to think of for a diagnosis.. it was finally the infectious disease doc that called it..he didn't want to, he ran more tests then any of the other docs I saw, as he said, it's a dead end diagnosis.  As much as I hate it, I'm fairly certain 90% of the people who know me think I'm faking it, lol.. it could have been worse...the first diagnosis was MS, then Addison's disease, then maybe celiac etc etc. Four MRI's, at least 50 blood tests, and two sleep studies later, lol.. as you say, whatever! At least it's finally diagnosed and I'm not crazy, that's all that matters.

I actually date a doc as well, he's an anesthesiologist and director of the pain clinic at his hospital..I think the whole diagnostic process made him even crazier than it did me.. he WAS one of those docs that felt cfids was a throw away diagnosis, an illness that doesn't really exist since there's no test and no cure. He's finally come around to realize he's not going to be able to fix me and it kills him. Luckily he's extremely understanding and supportive. Luckily I have no children, just a big lazy dog and kitten that has enough energy for all of us, lol.

Comment by the rogue quilter on June 24, 2012 at 4:27pm

omg!! other than in pain support group while undergoing extensive dx testing via 2 diff dr's, you are the first person that i have ever "met" that has cfids too!!

it is the most horrible dx one can have, to my way of thinking. much much worse than fibromyalgia...at least they can get relief fr pain ...or the worst of the pain...there is NO relif fr cfids. my husband just underwent a total hip. i am so exhausted i cannot think. fever, nausea, sorethroat and all the other little goodies that goes w this. i just call it my forever flu. people think it is another one of my lame jokes.

so ya know ...whatever. lol dh looks at my ph etc sees the "whatever" id, on my icq account.."whatever" ..i tell him ...well...what else is there to say..it is what it is. i was and still am as much as i can be extremely active too. unfortunately, He saw fit to also challenge me w severe athritis all my life...so the more i sit the more i hurt...the more i do, the more exhausted i get..but.."whatever" lollol. my son used to be so upset if i could not move ..get home from work and could not stay awake..just he and i alone..dad away on job assign. dson would "fix" dinner. you would be amazed how good a microwave "grill" cheese sandwich can taste when made w such love. i would tell him to save his sympathy and his tender care to aide to those in wheel chairs or worse, that as long as i could still walk and do for self i was 1000% better of than many others. still feel that way ..tho as an adult now, he pretty much ignores me and is always fussin' & helpin' me when i visit or he visit here. lol...

hope, tho slow, that your recovery progresses at good rate.

quilters are tough & strong!

Comment by viki hagan on June 24, 2012 at 3:44pm

my hand and wrist are getting better slowly but surely.. so I've been sewing a bit, but not nearly as much as I'd like... hope you are both up and around soon, lol. I I have chronic fatigue immunodeficiency syndrome, so unfortunately, I do a lot of sitting, the more active I am, the more I sleep.. it's ridiculous. I was awake all of about 6 hours yesterday in total. I was an extremely active person before I got sick so it's making me insane not doing much.. so I can relate to how you're probably both feeling about being stuck not doing much.

I look forward to seeing what you draw up! I think I am going to make a big block baby quilt out of the one block and do some more playing and make up a quilt for a nephew or something with the other blocks.

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