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Thread: sometimes I look/feel like this

  1. #1
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    Default sometimes I look/feel like this

    I feel like my symptoms are fluid. They come and go like the ebb and flow of the tide. Some are more stable and stay for an extended temporary time or stay permanently. I have been dealing with this on and off for close to 15 or 16 years and I am blessed that most of the time, I look and feel perfectly healthy. It's a double edged sword though because that lack of consistancy has led to a lack of diagnosis. Another problem for me is that over these 15 or 16 years I have lived in 3 different states and multiple residences in each state so I have had at least 5 PCPs over that time. My medical records are strewn across the mid-Atlantic seaboard and there has been no one to help me connect the dots.

    Sometimes I look like I have:
    ~red mylar rash (not always raised. not always bright)
    ~bumps that look like, but aren't, pimples across my face
    ~swollen joints, especially ankles, fingers
    ~random skin rashes mostly on chest and sometimes legs
    ~swollen/inflamed areas around my eyes
    ~psoriasis on my hands, face, knees, elbows, scalp
    ~a ridiculous amount of hair in the drains of my house from simple washing, brushing, styling, being. everyone I have ever lived with tells me it's excessive hair loss, but it all seems normal to me, although I remember when it started (around 15) I thought I had cancer b/c I knew cancer patients lost a lot of hair but I didn't know at the time it was from the chemo (pretty naive I know).
    ~fingers and toes so cold and blue that my mom has joked that they look like hands of the walking dead
    ~dry eyes that often itch and look bloodshot
    ~sores on my gums that the dentist can't identify a cause for

    Sometimes I also feel:
    ~like the sun makes me more tired/achy/stomach upset
    ~like bright light sources are too much for my eyes. I usually wear sunglasses when driving even on rainy days b/c the light brightness/glare feels too sharp to me. The lights at my office have bothered me at different times in the past too.
    ~horrible stomach aches
    ~achy joints, mostly wrists, fingers and ankles w/ all over stiffness
    ~short of breathe/chest pain (seems to be from the Sarcoids as I have had this extensively looked into)
    ~depressed (mildly not severely)
    ~fatigued (especially when the insomnia has kicked in)
    ~frustrated
    ~like others (esp doctors) are going to think I am making this all up & think I am a hyochondriac or drug seeker.
    ~like I am going crazy because although I can FEEL these things, often they are not able to be SEEN.
    ~this is never going to end
    ~like I am losing my mind, literally, and getting dumber by the day. Memory and facts are no longer as strong as they once were.

    So far I have been told I have:
    ~IBS
    ~Type 2 Diabetes (which I currently have under control w/o meds)
    ~Sarcoidosis

    Lately, I have been blessed to be feeling well, but I often feel like I am waiting for the shoe to drop and a random flare to come on again. I am also blessed that I am (mostly) able to control my symptoms/diseases without medications.

    For some reason, tonight I really felt like getting this all out. Thank you for muddling through with me. I think I am going to print this list to take with me when I go back to my rheumy in a few weeks because I just can't remember all of this or express it clearly enough when I am there, which is frustrating to me.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Default Feel 'ya pain ....

    Hi Sandy,

    I know EXACTLY where you are coming from .... I have every single symptom / feeling you have listed except for one ... my fingers/toes do not turn blue -- they turn white.

    I can't imagine going through this for 15-16 yrs and still not having a diagnosis. I am losing patience with not having a diagnosis after 1.5yrs.

    I feel exactly the way you do regarding people not believe me. I feel like I have to prove myself to them ...then I think .. you know what - screw you .. (Sorry for being forward) .. but really... they have NO IDEA what I am going through and it frustrates me as well. I feel like my family don't believe me .. I feel like my friends don't believe me ..a couple of them have even made fun of me because of being short of breath. and I feel like the Doctors for the most part don't believe me.

    I think that is the beauty of this board .. we all know what we are going through .. and we are all here to support one another. I hope you hang in there and know that we believe you .. and we are sorry to see you go through all of this ... We hope for you that you have more good days than you do bad days.

    Take good care .. and let us know how we can help.

    -SLA

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    Default

    If one more person tells me.."but you look good" I am going to scream!!I know they mean well but when you feel like crap and you can't even describe the "weirdisms" that happen, it IS frustrating as hell. Or they say.."oh, I've heard of that but..what is it'? Blahhhhh....and I can only think of the symptom I am feeling at that moment..lol. When I see my drain in the shower it takes my breath away sometimes...I have a lot of really curly hair( not in my photo...blow-out treat to myself) and people laugh at me when I say I am losing my hair...but I see the top thinning. I used to not feel the rain on my head for about 5 mins when outside...now I feel it right away. I start each day with that scary feeling in the pit of my stomach when I see the 'dreaded drain'.I know only you fellow sufferers can understand this...
    Andrea

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    Default

    I second that pandagirl!! About the comments that you LOOK GOOD! Im so sick of that one too!!!!! Its like if you dont have the visible signs of this illness, well then, whats so bad about it? GRRRRRRRR is what i say to them! Shoot, i ACTUALLY DO LOOK ILL alot! Its just that like with other symptoms of this illness, it comes and goes. And if LOOKING ill with rashes, severe dry eyes, a bloody nose that bleeds for 5 minutes just pooring out of my nostril, paleness......... doesnt happen all of the time, well then i MUST be lying is what i FEEL from some people and drs as well! Oh well, they suck and thats THEIR problem, not MINE. LOL
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Default hi

    Wow Sandy,

    This thread describes most of us here.Thanks for sharing and its good to know i too am not alone with many of the same ailments you have and go through.

    Thanks,
    love
    Amanda.xxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  6. #6
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Default

    Hi Sandy,

    I have, or have experienced in the past, probably 90% of the symptoms you mentioned. But more than that, the way you talk about symptoms being "fluid", feeling dumber every day, well, those could easily be my own words. I used to worry too about the whole perception of being a hypochondriac/drug seeker. But, I have a solid diagnosis for each of my problems, and I stopped giving a s--t what others thought of me, so I don't worry about that part anymore.

    It's good to write all this down while you are clear headed. I find that when I look at a list like this that I wrote while clear headed, it's almost foreign to me, like someone else wrote it. It's a good indicator to me of how badly I understand and percieve things while I'm having brain fog. And, it's good to just get it all out from time to time. You certainly are not alone, no need to keep it all in. Hope you are having a good day today.

    Rob

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    Default

    You guys are the best! This is why I love this board - the support and understanding and acceptance and love are overwhelming and just vibrate off my screen. Thank you all! The funny thing is, I actually feel GREAT right now. A little achy what with the rain and drained what with the emotional/busy schedule lately, but still I feel really GOOD. It's when I feel good for a long time that I start to question my own sanity and I think that's why I needed to write it all down, while I could think clearly, last night. I am sorry that the reason you all understood what I am saying so well is because you have experienced these feelings & symptoms too.

    SLA - I used to feel that I had to prove myself to the docs and then about 3 years ago I was like screw that! I KNOW I am not crazy. Heck, I hate taking meds if there is a natural/alternative solution and all my docs have always yelled at me for waiting too long to come in when I really am sick with something like sinus infection or bronchitis. Now I have painstakingly learned to be the one in control. If I am not happy with my doctors manner/attitude/behaviors towards me, I am willing to go find a new one. I finally, after 6 years of living in the same area, have a team of doctors that I am beginning to feel confident with. Don't give up. 1.5 years is a long time to not have an answer but once you have been given a treatment that goes past your untreated time (and I hope that happens soon) you will feel that 1.5 is shorter then it seemed. My diabetes has taught me that lesson. Hang in there.

    Panda - I get what your are saying about the drain. It gives me such a feeling of stress. I hate showering at other people's houses for fear they will think I am a hair losing freak! I can't count the # of Draino bottles I have gone through in the 3 years I have lived in this apt!

    Jeannette - I love your fierce optimism! it is so refreshing. you are right - it's their problem, not ours.

    Angel girl - you are not alone. I am glad that so many people can relate to this thread and saddened by that too. Just remember that you are not alone when your are feeling like you are.

    Rob - when I am thinking clearly, it all seems so obvious that I am not crazy. I know that I am not. Sometimes I just need to reaffirm these feeling to myself. You are not crazy either. Just a little luped! I have that don't give a sh-- attitude too. Probably the thing that has helped me to remember that at the end of the day, it's me and not the people around me (docs, family, and friends) who really know what this is like and what is going on and if they don't believe me then there isn't much I can do to make them believe me and I am not going to waste energy trying to convince them of something I already know is true. Let them live in denial. I want to live in the light.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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