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Heather
Forum Leader
Username: Heather

Post Number: 3312
Registered: 05-2003
Posted on Monday, September 05, 2011 - 08:28 am:   Edit Post Delete Post Print Post

Well after a very hot start (100 + index days) Sept is off to feeling like fall...it is quite chilly this morning and windy. Feels nice. Hoping with some cooler weather and hopefully some rain...the wildlife will return to our wetlands here. The water is soooo low and the lily pads are taking over the water area. Have not seen a whole lot going on. will post some pics as soon as I get them resized to fit here. hope everyone has a great Labor Day.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
DAP1122
Forum Leader
Username: Dap1122

Post Number: 2805
Registered: 05-2008
Posted on Tuesday, September 06, 2011 - 07:25 am:   Edit Post Delete Post Print Post

Heather,

Wow, we are not that far away and we've had plenty of hot weather, but with plenty of rain this year. Some of the warmest weather I can remember, but the yards haven't even burned out.

We are in Florida right now, but I saw the forecast for this evening when we return and it's going to be CHILLY!

Can't wait to see your pic's .... they are always awesome.

Wish you well.

~ Don
New blog/web page -
My2ndHeartBeat
Dap's Email

Heart Tx - 5/11/2007
DAP
Ohio, USA

Join our Transplant Buddies Calendar

Don's TransplantBuddies Blog
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2674
Registered: 03-2008
Posted on Tuesday, September 06, 2011 - 11:21 am:   Edit Post Delete Post Print Post

Hey Heather! Like Don, can't wait to see the photos. You are one talented photographer!
It is nice to have the cooler weather. Hope that has been a help to your skin.
All the best to you and Danny!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

My Donation Story

Post Donation Things to consider

I walk slowly, but I never walk backward - Abraham Lincoln
Heather
Forum Leader
Username: Heather

Post Number: 3313
Registered: 05-2003
Posted on Tuesday, September 06, 2011 - 09:20 pm:   Edit Post Delete Post Print Post

Thanks, Diane and Don.

Diane..actually it seems my rosacea flares much more in the winter..I think from the inside heat with no air moving...but you would think the hot would bother me more. Perhaps if I was not on the meds it would be different..I don't know. I did pretty well last summer though also. Change of weather does not agree with me though.

Still have not resized pics. I am busy working on my bathroom. Have the door off and am stripping and sanding that ..hoping to get it primed and painted by Thurs. evening. Then my friend brought over a night stand she wants stripped (or just painted) and painted...I am not sure what I am going to do with that...if I just paint I don't think it will look very good. Knowing me..I will do whatever is hardest...haha...and takes the longest...
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 3314
Registered: 05-2003
Posted on Tuesday, September 06, 2011 - 09:44 pm:   Edit Post Delete Post Print Post







Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2677
Registered: 03-2008
Posted on Sunday, September 11, 2011 - 03:07 pm:   Edit Post Delete Post Print Post

Love the photos Heather! You can sure see those feathers shimmer!
We have a red orchid out front. Every so often you will see some poor litte hummingbird try to get nectar from it - there is none so I feel sorry for them!
I really need to get back in the habit of feeders. I stopped a few years ago because I couldn't seem to keep up with changing the solution. After seeing your photos, it would be oh so worth it to try again!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

My Donation Story

Post Donation Things to consider

I walk slowly, but I never walk backward - Abraham Lincoln
Heather
Forum Leader
Username: Heather

Post Number: 3315
Registered: 05-2003
Posted on Sunday, September 11, 2011 - 04:37 pm:   Edit Post Delete Post Print Post

Thanks, Diane. I did not know orchids did not have nectar. Nice to know..haha. They like anything tubular it seems although I guess in desperation they have tried my daisies..but did not stay long.

Well with the weather change came a flare of something...my facial burning and rosacea. I can handle the normal pain of rosacea and the normal redness but I think with this burning on my left side..which seemed under control...but on my face is back. It is not quite as bad as it used to get and I am praying it won't get that bad. Mine gets really really red and hurts so bad. I have been putting aloe on it when it burns so bad and sitting with a fan on my face. That helps. Last year I think this happened as well. I did pretty good during the summer, like this summer..and I actually was able to be out in the hot weather and not have the burning. But seems like in fall when the humidity or something changes..my body goes nuts. I was also taken off the Cellcept about a month ago and have not been told to restart it..so I don't know if that has something to do with it or not. last year my old rheum. put me on prednisone for a month and also increased another drug I am on for nerve pain...and it finally calmed down...but not sure which one helped. I think my dermatologist also had me on an antibiotic (they do that for rosacea)...so who knows what helped it. Derm will not put me on anything oral with all the other junk I take. So now the temps are going up again...ugh.

So Danny has shoulder issues right now and cannot stand a fan hitting it at night..which makes it rough on me..so now I am in the process of thinking of how to rearrange the spare room so the bed is not right next to the walls with the heaters....the desk is HEAVY so I want to make sure things will fit before starting to move stuff...the reason for all this is if he can't stand a fan,,,I can't sleep in the same bed. he won't like it but oh well.

ok... off to measure walls and stuff......
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 3324
Registered: 05-2003
Posted on Thursday, September 29, 2011 - 10:30 pm:   Edit Post Delete Post Print Post

ok..threw the rearranging idea out the window even though I thought I had it all figured out til I realized I had not taken into account the treadmill...duh...that is in there as well. So when I realized that...it was pointless. No room.

my face and the burning on my left side is not leaving...the weather is back and forth right now..some days I have just the rosacea pain on my face and the tight pricky feeling. Others I have the severe burning. I am back on the Cellcept..i think the 12th of Sept. I started back on per my docs orders of course. I am only on half the dose I was on before ..but bet that will either be doubled again..or discontinued altogether. I have 2 appts. in Indianapolis in the morning one with the Rheum. and one with the hematologist. I don't know what will come of those appts. I have no idea cause up til now...I thought things were getting better....then the whole low white count thing happened, off the cellcept...anxiety moves in for awhile, stress...and everything goes to pot...so we will see.

I gotta get up early and leave here by 630 so off to bed I go and hope I can sleep this early.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 3325
Registered: 05-2003
Posted on Friday, September 30, 2011 - 07:14 pm:   Edit Post Delete Post Print Post

so much for sleep...had a horrible night...got maybe 2 hours. Oh well. so basically what happened today is increased 2 meds i am on and my rheum. wants me seeing a neurologist...I said I have been to 3 that I can think of in 2 years..including one at Mayo...they cannot find anything. She said she is treating what she feels are neurological symptoms so she wants a neuro. on board as well. jeez. do I really need 3 docs plus labs to go to so far away?? She has one in mind but she is not sure my insurance covers her...so we will see. SHe is to send me a referral sheet then I can look it up and fax or send the referral to them. So that is all I know. Got my flu shot as well. She likes giving out shots..haha

Was a gorgeous day but windy so a little cool. It was rainy, cold, windy and nasty in Indy..but when I got home..blue skies and gorgeous. Tomorrow..colder. Then next week a little warmer again. Oh my poor face....
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
DAP1122
Forum Leader
Username: Dap1122

Post Number: 2834
Registered: 05-2008
Posted on Friday, September 30, 2011 - 07:22 pm:   Edit Post Delete Post Print Post

Wow, Heather, I hope they are able to get you some relief very soon. Will keep you in my thoughts and prayers.

Rearranging ....... for me the ONLY way to do that is on graph paper and then move stuff ONE time. It's simply too exhausting any more.

Be well and God Bless ~ D
New blog/web page -
My2ndHeartBeat
Dap's Email

Heart Tx - 5/11/2007
DAP
Ohio, USA

Join our Transplant Buddies Calendar

Don's TransplantBuddies Blog
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16572
Registered: 05-2003
Posted on Friday, September 30, 2011 - 07:35 pm:   Edit Post Delete Post Print Post

Dear Heather

Love your photos! You are a very talented photographer.

I am sorry to hear you are having so many problems with your health. Cellcept can instigate anxiety.

Just an FYI. I learned today that too much vitamin B12 can lead to Rosacea. Recently, I had a vitamin B12 and folate blood test and both numbers were high. I am having some symptoms related to a high dose of b12. I just wanted to put this out there in case you never were tested. I am no longer taking my b complex which was low dose. I am going to have another test soon. I guess I eat so healthy I no longer need this supplement. So many symptoms can mask various conditions. I am having some skin irritations for sometime and just chalked it up to stress. Time will tell.

Sending you a BIG HUG with lots of love,
Rise'
CF- dx at 2yrs. 2nd double lung tx-05 JMH
My Photos on Transplant Friends

Questions-contact
transplantbuddieshelp@gmail.com
Heather
Forum Leader
Username: Heather

Post Number: 3327
Registered: 05-2003
Posted on Friday, September 30, 2011 - 09:53 pm:   Edit Post Delete Post Print Post

Don...I had all the measurements on paper and everything had a place on the paper...I just threw it out when I stood there one day and looked at the treadmill and thought...omgosh...where in the world will that fit? it won't any other way than the way it is.... and it IS exhausting to move stuff around.

Rise...I will check my levels next blood draw if I remember. I can have her add it to the standing order. She is good about that...I don't take any B vitamins other than a multivitamin (Alive). I heard from a doc a few years ago when all this started that niacin can cause burning ...is that a B vitamin?

Thank you for the big hug..one right back at you. Hope your skin calms down. I would not wish my skin problems on ANYONE.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16575
Registered: 05-2003
Posted on Saturday, October 01, 2011 - 03:52 pm:   Edit Post Delete Post Print Post

Hi Heather,

Yes Niacin is part of the B family. http://www.umm.edu/altmed/articles/vitamin-b3-000335.htm

My skin looks to be improving. Time will tell.

Your bio picture is so cool. You look like you are starring at me LOL

Have a good nite
Rise'
CF- dx at 2yrs. 2nd double lung tx-05 JMH
My Photos on Transplant Friends

Questions-contact
transplantbuddieshelp@gmail.com
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2690
Registered: 03-2008
Posted on Saturday, October 01, 2011 - 07:10 pm:   Edit Post Delete Post Print Post

Oh my gosh! Another doctor! Poor Heather! They just have you running all over the place! One of the ladies I work with has rosacea. The doctor had her taking niacin for a heart issue, and, like Rise said, it irritated it something terrible, so they took her off it.

Weather over here has been a little cool, but nice for the last few days.
Hope you are having a good weekend!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

My Donation Story

Post Donation Things to consider

I walk slowly, but I never walk backward - Abraham Lincoln
Heather
Forum Leader
Username: Heather

Post Number: 3329
Registered: 05-2003
Posted on Saturday, October 01, 2011 - 10:33 pm:   Edit Post Delete Post Print Post

oh but Rise...I AM looking at you...all the time...lol. Old pic. hair is short now.

I am gonna have to look into this about the B and niacin. I think I am going to stop my multivitamin....just to see if there is a difference..but then who would know since they increased my other stuff...at the same time. Would be nice if it was something that simple, I will stop that and just continue taking my D3 and Calcium as I was before...and eat plenty of veggies.

Diane...do you know what your co worker is on to control the rosacea or is it bad enough for her to take something..or use something topically?
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16578
Registered: 05-2003
Posted on Sunday, October 02, 2011 - 08:29 am:   Edit Post Delete Post Print Post

Hi Heather,

I would actually have a blood test because you could have the opposite problems. My skin looks better today but then again it could be a better nite's sleep:-) Healing does not act alone there are always other variables to contribute to one's wellness.

I eat very healthy and obviously get enough with my B supplements. I am not sure if I will stay off of them completely. I will have another blood test to confirm this.

Do your own research ok. I will say this that my doctor who gave me the blood test two years ago (endo) never called me back to tell me to lower my B12 and another doctor told me you cannot overdo the b's. Many docs never had enough training in nutrition.

Be careful.
Rise'
CF- dx at 2yrs. 2nd double lung tx-05 JMH
My Photos on Transplant Friends

Questions-contact
transplantbuddieshelp@gmail.com
Heather
Forum Leader
Username: Heather

Post Number: 3330
Registered: 05-2003
Posted on Sunday, October 02, 2011 - 09:10 am:   Edit Post Delete Post Print Post

we have a health food store here in town where the people (everyone that works there is related) are very knowledgeable on health and nutrition. Perhaps i will ask for those to be added to my blood work in a few weeks and take the results up to the store. One lady there I found out about a month ago ...has APS just as I do...hers was actually diagnosed by Dr. Hughes in England (or somewhere over there)...he is the one who the disorder was named after and he I guess either discovered it or did the research..I don't know...but Hughes Syndrome and Sticky Blood are other names for APS. she had several miscarriages. anyway...she got off all her meds and takes health supplements and her bloodwork is fine. However...I have more going on than she does so I don't dare do that. I will be careful ..trust me...i don't want any more problems. I have never been told my B's were out of line but I may look back at my labs.

neat thing with IU now is I can access my labs online through a new site they have. I can also leave messages for my doctor, look up my appts. etc.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16579
Registered: 05-2003
Posted on Sunday, October 02, 2011 - 10:12 am:   Edit Post Delete Post Print Post

Glad to hear this Heather
this is one of the websites that I found on too much b12
http://abouttesting.testcountry.com/2010/02/10-important-side-effects-of-too-much-vitamin-b12-that-people-don%E2%80%99t-think-about.html

I found a vegan forum that shares many links on taking too much b12
http://www.veganforum.com/forums/showthread.php?169-B12-overdose-megadose.

I was always told because of the CF to eat more, take a larger dose of vitamins because I have a poor digestion. My only regret was not to ask for my copies of all the blood work I have had over the years. Now I do. I have copies galore.

We have to be our own best advocates.
LOVE
Rise'
CF- dx at 2yrs. 2nd double lung tx-05 JMH
My Photos on Transplant Friends

Questions-contact
transplantbuddieshelp@gmail.com
Heather
Forum Leader
Username: Heather

Post Number: 3335
Registered: 05-2003
Posted on Wednesday, October 05, 2011 - 05:36 pm:   Edit Post Delete Post Print Post

Thanks, Rise. I will check those out. I never have gotten around to dragging my briefcase full of medical records out. I should do that cause my gyn wants copies of Mayo records....I need to start another thread for Oct....
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16602
Registered: 05-2003
Posted on Wednesday, October 05, 2011 - 07:12 pm:   Edit Post Delete Post Print Post

Hi Heather

You are welcome!
We are in Oct. YES indeed! :-)
CF- dx at 2yrs. 2nd double lung tx-05 JMH
My Photos on Transplant Friends

Questions-contact
transplantbuddieshelp@gmail.com

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