Physical Disability & Self-Esteem: Life As It Is Now, Coming To Terms, Rising Above

[Whispertome]

I apologize if I am coming off short or rude..no sleep last night

[PearlsNLace]

I forgot to mention, the doctor does not think I have diverticulits..I have some nasty infection floating around..has me on major antibiotics..The gastro will not test until the fever I had have for the past two weeks go away..If it doesn't who the heck knows

are we all falling apart or what lol I have to have humor, if I don't laugh I will go insane

Thanks for the update. Been lurking, thought you might have had your appointment, and wondered when it was. Much more hopeful that this can just go away with a pill huh? My fingers are crossed for you,
Pearls

[Shyfemmekat]

Thanks for the update. Been lurking, thought you might have had your appointment, and wondered when it was. Much more hopeful that this can just go away with a pill huh? My fingers are crossed for you,
Pearls

Glad you are no longer lurking...the more the merrier!

SFK

[Shyfemmekat]

curley..I like the idea of the aliens popping out of your leg..maybe they will be Tribbles (from Star Trek) cute furry little creatures that make people feel happy when they hold them..

But make sure you do not feed them, the multiply and you will wind up having your home taken over..

Hmmm...sounds a lot like cats to me, but I may be prejudiced....

Home again and getting ready to do some housework.

SFK

[Peregrine Magic]

Shy, why are you having an MRI of your brain & spine? ( Not my favorite thing, personally...) I'm hoping it's routine.

My blood test results came back. I am both anemic and have elevated cancer markers. In my case this combination is a cause for concern, since my breast cancer metastases are in my bone marrow. The mets have impaired my ability to produce normal red blood cells in the past, in fact that's how I was diagnosed. I have to go in next week for more tests, and I am trying to dissociate until then.

I was hoping the anti-hormone meds I'm taking would work for a while. It's possible my blood test results are not the bad news I fear, but I think I'll wait to get my hair cut until I'm sure I'm going to continue having hair.

Aargh.

Peregrine

[Whispertome]

Thanks for the update. Been lurking, thought you might have had your appointment, and wondered when it was. Much more hopeful that this can just go away with a pill huh? My fingers are crossed for you,
Pearls

Thank you PearlsNLace (love your name)..I will take all support, finger crossing and prayers that are given to me I hope it will just take a pill. I am relieved that I do not have to do that yucky scope test yet

Welcome luker lol..nice to meet you

[BlueMoonWolf]

We have a regular poster who also has lupus. She is a veritable treasure trove of twisted humor, helpful hints, and a very big heart.

Can y'all help purechaos out with links, info, resources?

oh oh that must be me LOL took me a bit to figure that out!

Purchaos, I know right now it feels like you are all alone with this new diagnosis but you aren't there are lots of us lupies out there. there are 1 800 numbers you can call, support groups, fund raiser walks and people you can talk with to let you know what is going on with new developments. that is when you are ready, right now it's okay to be scared, frustrated and angry as hell at what your body is doing to you.

Did the dr tell you that you have SLE (systemic) or Dyscoid (skin only)? that is going to make a big difference in what kind of information you are going to want. Me, i have SLE. I ask because you mention the rash and biopsy of that rash which makes me think you have Dyscoid.

Either way there is a fabulous website called Lupus Foundation of america it's one of the places i first found information at until i found the Society in Canada.

If you just want to talk feel free to PM me
BMW

[BlueMoonWolf]

Oh and i forgot to say... Welcome to the thread new people and now non lurkers!

(can we tell i forgot to take my meds this morning? everything is grooovy simply because well i have the attention span of a knat LOL)

[Shyfemmekat]

oh oh that must be me LOL took me a bit to figure that out!

Purchaos, I know right now it feels like you are all alone with this new diagnosis but you aren't there are lots of us lupies out there. there are 1 800 numbers you can call, support groups, fund raiser walks and people you can talk with to let you know what is going on with new developments. that is when you are ready, right now it's okay to be scared, frustrated and angry as hell at what your body is doing to you.

Did the dr tell you that you have SLE (systemic) or Dyscoid (skin only)? that is going to make a big difference in what kind of information you are going to want. Me, i have SLE. I ask because you mention the rash and biopsy of that rash which makes me think you have Dyscoid.

Either way there is a fabulous website called Lupus Foundation of america it's one of the places i first found information at until i found the Society in Canada.

If you just want to talk feel free to PM me
BMW

See, I told you she was good people! Thanks, BMW!

SFK

[Shyfemmekat]

I want to tell all y'all about a great blog that deals with Traumatic Brain Injury done by a beautiful soul from this site. She knows firsthand what it is like to come back from a traumatic brain injury and reaches out to others.

Adele's Spot...a place to share.
http://adelespot.net/thedetails.html

I know some of you on the thread are dealing with the very same thing and I urge you to go take a look and come away uplifted. Others in our community have been there, too.

SFK

[ArchAngel Gabriel]

it is friday
i am tired
but it is friday
so all is ok in my world

[Jules]

I've tried to read the past 10 days posts lots of folks have a lot going on! I'm still pretty groggy/loopy, so this is short. I've been in the hospital again, very high temps, up around 105 and couldn't walk I was so weak. Well, what a surprise...PIC lin infected with some type of fungus. So, the old PIC came out and a new one in. I've been on a topsy turvey ride this week, most of it is missing due to pain and nausea meds, I couldn't tell you hardly anything that happened. Oh, in the middle of all this I had an EGD as well.

I'm convinced they have no idea what's going on, so they just rhrow darts and what ever is hit is my disease for the day. Once they get mr functional, they send me home with no answers.

But I'm home and life goes on......very slowly

[curley]

just a little whine from me... This fatique with lupus sucks but now I find that here is an added bonus of fatquie with menopause, who made that dumb ass rule?

[Peregrine Magic]

[...] now I find that here is an added bonus of fatquie with menopause, who made that dumb ass rule?

I dunno, but if you find out maybe we can start a writing campaign to get the rule changed.

Peregrine

[Peregrine Magic]

I've been in the hospital again, very high temps, up around 105 and couldn't walk I was so weak. [...] Once they get mr functional, they send me home with no answers.

Now I'm just getting mad. What the hell? You're probably too exhausted to be pissed, but I'm there on your behalf. Jules, do you feel your docs are competent and legitimately baffled by your quirkiness-- or do you need to see someone else? Is the person who performed the original surgery one of your caregivers or have you gotten outside input? Forgive me for overstepping if I am, but I like you and this is not just worrying me, it's making me suspicious...

Peregrine

[Shyfemmekat]

I've tried to read the past 10 days posts lots of folks have a lot going on! I'm still pretty groggy/loopy, so this is short. I've been in the hospital again, very high temps, up around 105 and couldn't walk I was so weak. Well, what a surprise...PIC lin infected with some type of fungus. So, the old PIC came out and a new one in. I've been on a topsy turvey ride this week, most of it is missing due to pain and nausea meds, I couldn't tell you hardly anything that happened. Oh, in the middle of all this I had an EGD as well.

I'm convinced they have no idea what's going on, so they just rhrow darts and what ever is hit is my disease for the day. Once they get mr functional, they send me home with no answers.

But I'm home and life goes on......very slowly

I was going to call you since I hadn't heard from you. I'll call you later today. Rhon has to help a friend with a college project and then it is Date Night, but I will call you inbetween times.

Peregrine is right, can you get referred out to Mayo or someplace similar? Have you already gotten a second opinion from someone else? (Besides us, LOL) How about an Infectious Disease specialist? We'll talk about it when I call.

Gentle Hugs and my best to the family,
SFK

[ArchAngel Gabriel]

prayers/ good thoughts going out to all who need them today.


I think my remission is kind of fading and I am sort of sidelining myself for the duration. I am still able to cope with working but as long as they have 3 gals I am gonna revert to the cheering section for softball. I can still help warmup but running still hurts way too much.

I can still do just have to rethink how I do Ya know? maybe it is a good thing I started crocheting again cause this provides me a way of doing for others when I can not do my sporting building activities.

I do ask you to think good thoughts as my current job is due to end so that I find adequate doable work after that...

I need to finish putting all my rescued books on their new shelves. I do not have enough but my workshelf has enough room to tripple stack or double depending on the size.

I have my sewing supplies on the little shelf and as long as julie does not start helping me they should be ok. I put everything I could into julie proof containers. I like things neat. I also like storage containers that to not look all frufruy so I get quite a bit of things at the hardware store. I am on first name basis with my local one lol.

I am back to getting things all put away and just sitting for a bit and resting.

gotta get things all set for when my roommate moves over... Sometimes I wish I could up and do what i could as a youngin

[Shyfemmekat]

What if you were unable to respond due to a medical emergency? How would others know your medical information?

This was a topic brought up in our place a few days ago and I realized I do not have all my medical information in one place if something happens. Woops.

Here is a neat gadget that can help you do that! It uses a USB memory stick to store your information: things like your name, medications, insurance info, living wills, etc. It doesn't take special software, either. The data on it can be accessed by the laptops they use in most emergency vehicles.

For about $30 including shipping, that's a pretty good deal for peace of mind. I am thinking about getting one and having Rhon show me how to load it up.

Identification Devices
http://www.identificationdevices.net/app2.html

If you are not into computer type stuff, please get all your medical info together: your doctor(s) names, contact into, the drugs you take and doses, your diagnosis/diagnoses, allergy info (don't forget things like latex), your living will if you have one, family or emergency contact info, etc. Also if you are an organ donor, don't forget that information as well, but let your loved ones know ahead of time! Don't let it be a surprise.

It's always better to be prepared in case something happens. Let's all get that done.

Hugs,
SFK

[BlueMoonWolf]

If you are not into computer type stuff, please get all your medical info together: your doctor(s) names, contact into, the drug you take and doses, your diagnosis/diagnoses, allergy info (don't forget things like latex), your living will if you have one, family or emergency contact info, etc.

Hugs,
SFK

I went with the low tech (read as cheap solution) I have a 3 section coil. in the first section is the names and phone numbers of all of my dr's, prescription info, DX info, meds that are being tried for 30 days and the results. I also have a dated info on which dr i have seen when and what the result was/is (trust me the Dr's love this because normally i see another Dr before the reports have filtered through)

in the next section i have a listing of symptoms, what is used to treat it, list of concerns I want addressed

and the last section i have a call list of all of my friends and family. Family first then friends.

Everyone knows that i have this notebook and where it's kept. The only thing i don't have at the moment is a living will because the information is not current and correct.

Oh yeah in the back there is a little spot that i can put all the articles, applications etc that i can drag around to the dr's offices.

i learned this trick from a Lupus support group i belong to

[Whispertome]

BMW.. I love that name, you have to be classy considering the car is

I do the same thing you do..I have a book, and when I have questions for my doctors, I write them down. I also keep a card with all my meds I am taking, just in case

[Woodie69]

Shy,

Thanks for the link to Adele's Spot. I had it once, but lost it somewhere on this computer. I am just so not a computer person.

[Whispertome]

I Hate it I Hate it.

I thought I was getting better. NOT, the major nausea is back.. and of course, I need to make sure there is a bathroom nearby

On top of all this, I am finding myself building into a major Fibro flare up...ugh

[ArchAngel Gabriel]

i so was not liking my cutting table set up so i grabbed the wheelie cart and took off on a walk. I ended up at the library and brought home some more rescue books. On Monday I will hopefully get to the friends of library shop and score a bag of gardening and cookbooks for something like a 1.00 or 2 whatever they pricedrop

Upon returning home I decided this is ok after all and maybe i am just not used to a clear table surface lol. I just need to put all patterns into notebooks by type. woodworking
stained glass
crochet
quilt
knitting even though i barely knit
building
and one for house plans cause i just like them
and maybe even a god knows where book for misc junk i tend to find but want to keep pattern wise.

I really am trying to get organized. This is not easy for a person with fibromyalgia and adhd. insert grin here. I do have office supplies paper and unused cd and whatnot on the short shelves i am using as a table base. Bud might have trouble getting stuff stored there but i can since i am height challenged and only 5'2

if i had a drill i would be hanging my plant hooks lol. and maybe shelf brackets. All I know is i can not hammer into these funny walls.

I am glad i went ahead and took that walk cause even though i am now tired i do seem to feel better. Here is to hoping the rest of the day is beautiful for everyone.


off to put more books on the almost full shelf behind me...

[Whispertome]

i so was not liking my cutting table set up so i grabbed the wheelie cart and took off on a walk. I ended up at the library and brought home some more rescue books. On Monday I will hopefully get to the friends of library shop and score a bag of gardening and cookbooks for something like a 1.00 or 2 whatever they pricedrop

Upon returning home I decided this is ok after all and maybe i am just not used to a clear table surface lol. I just need to put all patterns into notebooks by type. woodworking
stained glass
crochet
quilt
knitting even though i barely knit
building
and one for house plans cause i just like them
and maybe even a god knows where book for misc junk i tend to find but want to keep pattern wise.

I really am trying to get organized. This is not easy for a person with fibromyalgia and adhd. insert grin here. I do have office supplies paper and unused cd and whatnot on the short shelves i am using as a table base. Bud might have trouble getting stuff stored there but i can since i am height challenged and only 5'2

if i had a drill i would be hanging my plant hooks lol. and maybe shelf brackets. All I know is i can not hammer into these funny walls.

I am glad i went ahead and took that walk cause even though i am now tired i do seem to feel better. Here is to hoping the rest of the day is beautiful for everyone.


off to put more books on the almost full shelf behind me...

LOL, I highlighted the above because I can relate to them lol..

I would love to be able to be more artistic. I probably can be, but I sometimes just cannot motivate myself. I do paint with oils..but I take sometimes a week break from what I am working on. I really get lost in the painting when I do

[Whispertome]

I did it to myself I sat on this computer too long in the past two days. I got up this morning where I can barely walk....I should no better

Hugs and Love for everyone

[Peregrine Magic]

I did it to myself I sat on this computer too long in the past two days. I got up this morning where I can barely walk....I should no better

I hate it when I do this. For what it's worth, you are not alone...

Peregrine

[Whispertome]

[quote=Peregrine Magic;2433734] I hate it when I do this. For what it's worth, you are not alone...

Peregrine

Pergrine..Thank you

It is nice to know I am not alone. I sometimes forget my back problem until I do something not too bright

[Woodie69]

Hi All,

Sorry I haven't been posting regularly. I have been battling my depression, but also my fast heart rate and increase blood pressure. I am now on medicine to slow down my heart rate, which is also lowering my blood pressure. I feel like I am in the slow motion world of living right now. I am on the lowest dosage possible, but really am looped by it. The dr's think that it is a combination of all of my medicines plus this one on top of it. It is all caused by stress and anxiety. All of which is over my worker's comp case. I just wish my employer's insurance carrier would just once give me a break without trying to create mountains out of mole hills. UGH!

I have a question for those of you who croche (sp?). Do you ever croche sweaters for small dogs (about 3 or 4 pounds)? Rosie and I had a neighbor who made our past dog, Lil a croched sweater, but Lil was 90 pounds. And Dino is a toy miniature pincher. Any ideas?

I was also watching a tv program on Mother Teresa, and the charity work she did. She was such a loving, and loyal teacher, helper, advisor, and nurse in some cases. Did anyone else catch this program? It was on the history channel (basic cable) this afternoon. I really enjoyed it. Then afterwards the miracle at Fatima was on. That was just a wonderful movie as well.

Thinking of you all - all the time. You are all in our prayers and my white candles burn daily for us.

Love and peace,
Andrew

[Whispertome]

Hi Andrew

I do not know how long you have been on your heart meds, but I know it does take some time for your body to get used to them. If you feel as if they are causing some side effects , let your doctor know..

[Whispertome]

I am not sure if I shared any of this information, so I will now

I have found that eating/drinking anything organic helps me a lot. Some organic food here is comparable to other food , but some items are so costly there is no way for me. Organic chicken here is a little less than the non organic..Also I have been told by a doctor that chicken skin from non organic is not good ....I know, sometimes the best part

I have also leaned that anything with MSG or nitrates in them cause major flareups also. Whey protein in a powder that you can make a drink out of helps too. It comes in different flavor, my favorite is chocolate

Just wanted to pass the info on..

[Jules]

Thanks everyone for the good wishes and advice. Yes, as soon as I'm up to it I will be looking for a second opinion for all of this mess. Right now I am being fed through a G-tube that goes directly into the "un-used" portion of my stomach. This is an overnight process. I am also on an antibiotic, can't remember the name, that goes in IV over a period of an hour.

I really don't know who to go to for another opinion. The plain truth is I refuse to go through another surgery, so I'm hoping someone can come up with a solution. I still don't take much by mouth. I did have some tapioca pudding last night and some oatmeal this AM, but still continue to be nauseus. *sigh* Diana has been such a trouper through it all. Its nice to have my own personal angel.

Well, I've worn myself out already, so I guess I will go back upstairs (about a 15 minute process) and back to bed.

I hope this finds everyone doing well. Again, thanks for all the support, it helps so much!

[Woodie69]

I am saying my prayers and have my white candles burning for all of us here.

Love and peace to all,
Andrew

P.S. I am taking something called Beta Blockers (someone asked me what I was taking for my heart). It really is wiping me out, physically.

[curley]

I am not sure if I shared any of this information, so I will now

I have found that eating/drinking anything organic helps me a lot. Some organic food here is comparable to other food , but some items are so costly there is no way for me. Organic chicken here is a little less than the non organic..Also I have been told by a doctor that chicken skin from non organic is not good ....I know, sometimes the best part

I have also leaned that anything with MSG or nitrates in them cause major flareups also. Whey protein in a powder that you can make a drink out of helps too. It comes in different flavor, my favorite is chocolate

Just wanted to pass the info on..

I've been jucing for about 3 weeks did'nt notice any difference, but when I stopped for a few days I sure did. So I guess it helps

[Woodie69]

All of my docs told me to wear or have some sort of medical alert jewelry on or in my wallet, etc. It would help if something did happen in public, and I needed medical attention. I highly recommend getting something for all of us who are disabled in some form or fashion.

[Shyfemmekat]

Hope everyone is doing well. I'm in kind of a bad space so I may be scarce around here for a couple of days.

SFK

[Whispertome]

Take care of yourself SFK, we all love ya and need ya around!

[Whispertome]

All of my docs told me to wear or have some sort of medical alert jewelry on or in my wallet, etc. It would help if something did happen in public, and I needed medical attention. I highly recommend getting something for all of us who are disabled in some form or fashion.

That is a good idea Andrew..I worry sometimes about what kind of meds they would give me if I was unable to talk for what ever reason. The meds I am taking are sensitive to others

[Shyfemmekat]

Sorry I am crabby, y'all, lots on my mind.

Please keep lionandlamb in your prayers, she is having a frustrating time trying to get some tests done. She always tries to lift others up and is a real inspiration to me so let's lift her up as well.

Please pray for my r/t friend S. who is having some bad emotional problems right now. She tried to commit suicide Saturday and called me. I talked her into going to the hospital and they kept her. Physically she is stable and OK but they have admitted her to try and deal with the emotional stuff now. She is a GLBT lady very active in GLBT rights and member of the MCC church I attend sometimes.

I have been trying to be a support person for S. without getting triggered myself which is a real struggle right now. As all y'all know I take my friendships seriously and feel God wants me to support and encourage and sometimes it can be draining. I need stamina and have been praying for that.

Gonna make some phone calls tomorrow...Jules, this means you. There is more Smiley Mail going out this morning.

I have to leave for a doctor's appointment in about an hour to have him look at my left leg and my funny looking wrist and do some bloodwork. Still have to schedule the MRI's. Grrrr. Gotta fly...

Best,
SFK

[ArchAngel Gabriel]

hugs of choice

Sorry I am crabby, y'all, lots on my mind.

Please keep lionandlamb in your prayers, she is having a frustrating time trying to get some tests done. She always tries to lift others up and is a real inspiration to me so let's lift her up as well.

Please pray for my r/t friend S. who is having some bad emotional problems right now. She tried to commit suicide Saturday and called me. I talked her into going to the hospital and they kept her. Physically she is stable and OK but they have admitted her to try and deal with the emotional stuff now. She is a GLBT lady very active in GLBT rights and member of the MCC church I attend sometimes.

I have been trying to be a support person for S. without getting triggered myself which is a real struggle right now. As all y'all know I take my friendships seriously and feel God wants me to support and encourage and sometimes it can be draining. I need stamina and have been praying for that.

Gonna make some phone calls tomorrow...Jules, this means you. There is more Smiley Mail going out this morning.

I have to leave for a doctor's appointment in about an hour to have him look at my left leg and my funny looking wrist and do some bloodwork. Still have to schedule the MRI's. Grrrr. Gotta fly...

Best,
SFK

[Peregrine Magic]

I have been trying to be a support person for S. without getting triggered myself which is a real struggle right now. As all y'all know I take my friendships seriously and feel God wants me to support and encourage and sometimes it can be draining. I need stamina and have been praying for that.

It's a major balancing act to be in the position you're in. What do you do for yourself, for self protection in times like this? I know you pray. Do you have someone local to talk to about this issue?

**********************************
I just got sort of good test results. While I'm still a bit low in normal red blood cells, they're slightly higher than they were last week. I was really hoping to avoid chemo for a while, and it looks like I got my wish. I am still very easily tired, though. I should have bought a longer couch; it'd make napping easier.

Happy Tuesday (Tyr's Day) to everyone. May you filled with Tyr's warrior spirit to stay acutely conscious and act from a courageous heart.

Peregrine (mythology freak)