Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  We've upgraded to YaBB 2!
1  Blogs / Blogs / Re: redbird's blog and stories
 on: 03/16/18 at 03:58:27 
Started by DeborahW, Founder | Post by redbird  

Oh come on… all of you have wished and dream of winning the lottery.  We think about what we would do…pay of all debts…send the kids to college…a new car one of those that runs down the road faster than you can drive and does not use gas…you just plug it in to the electric and you are set to go…maybe a new house…give money to some good charities…and the list could go on and on…..
We also know how hard it is to win…next to impossible…the odds are sure against you…and you know there are all kinds of lotteries….some for money or cars or pizzas or vacation or a life time of chocolate candy…BUT WE WON A LOTTERY….
One of the interesting things about our win was….we did not know we won….we did not get a letter in the mail nor a phone call….it just came…
Our award came in the silence of the night…no balloons…or a knock on the door…just silence…in fact we did not know we won until  son went  outside… saw the prize laying right there on the ground…not wrapped with a bow it just lay there on the ground…
Mom he called….come and look at the yard…and I did…and there lay the prize….someone had rototilled our front yard…sure enough there it was…none of the neighbor’s yard seem to have this event..just us…so am thinking this is a lottery prize that we won…another yard around the corner had a few places so guess they won second place…
So now I am out carefully looking and suddenly it hit me…and being an old farm raised gal…I instantly knew…hogs had dug in the yard…not in a small place a biggggg one. We had heard about feral/wild hogs in our area but  never thought about a visit from them delivering such a prize…now in front of our house is a large pasture…and behind us a small pasture and how lucky we were that they found us to deliver our prize…nothing for the neighbor to the left or the right…just us…it was done so well that neighbors ask us if we were going to plant a garden…
So I am looking and trying to understand why we won this prize…I found that a group of wild hogs are called “sounders” and they can smell for 5-7 miles and 25 feet underground…so the only thing that I can think of is….we have a dirty smelly lawn.
So be careful what you wish and dream for…winning the lottery can not always be fun..

The word writer Cheesy

“getting old is not for wimps”

Flowers are natures smiles

2  Blogs / Blogs / Re: redbird's blog and stories
 on: 03/06/18 at 03:16:44 
Started by DeborahW, Founder | Post by redbird  

Today is the day…yup today we change the reading material in the bathroom….you know the book or magazine that is there for you to look at or read while performing your duty.

Currently and for many months mine has been a recipe book ….telling you all these fancy things that you can make and if you are honest with yourself …realize that you will never make one…

Now some of the pages you have memorized…you could recall that recipe from the depth of your memory…just see it on your table for dinner...and then again you are honest…it will never happen…

So what is next for this scared spot…hummm maybe a travel picture book…nope will not happen as going to the local market is a really big event…

How about how to decorate the house…nope that will not happen…you do not even have the energy to dust…

You could read how to invest your money and see how the stock market is doing…nope you do not  need to read that… money is tight and the wallet is thin…

Maybe a picture book of flowers as your coloring is going strong and it is good to see all the wonderful colors….

So what is the answer…I am not sure but will let you know what lands in my bathroom spot…

The word writer

Getting old is not for wimps

Flowers are nature's smiles

3  Blogs / Blogs / Re: redbird's blog and stories
 on: 02/22/18 at 05:09:26 
Started by DeborahW, Founder | Post by redbird  
just a gentile reminder....

if you know someone who needs "FLOWERS"  or needs to know someone cares please send their name and address to the email address listed here and I will be sure that they go out right away



4  Blogs / Blogs / Re: redbird's blog and stories
 on: 02/19/18 at 07:50:47 
Started by DeborahW, Founder | Post by redbird  

With the passing of Olive I was ask to write something about her.  I really had to stop and think of how I could do that.

Olive was a special person to many not only as a source of information regarding Mastocytosis but a friend to many of us who struggled each day with this disease.

I first met Olive in 1984 and we have been friends since that time.  Over 33 years. We met in the Mastocytosis online chat room.  You could log into the room and there was always someone to lift your spirits or just tell you that you were not alone. I miss that.

We talked on the phone a lot and emails flew between us several times a week.  We supported each other…we laughed together…and we cried together and most of all we hated Mastocytosis together.  If I was ill she was on her vast data base of Masto to see if she had information to help.

Our last projects together started as a joke.  Olive sent me a color book for my 83th birthday as I  had been  very stressed.  She had read that it was good for stress and it worked.  It was the start of “Pencil Paintings” and a series of Flower Missions pictures that I color and sent to people who just needed to know someone cares. Thank you for that Olive.

Thank you Olive for being my friend…I will miss you…and I cried.
Joyce “redbird” McEntire  
Cry Cry   Cry Cry

5  Blogs / Blogs / Re: redbird's blog and stories
 on: 02/19/18 at 05:56:41 
Started by DeborahW, Founder | Post by redbird  
Oh goodness…I looked and did not realize that it had been so long since we talked.. I decided to get off my lazy backside and write a few lines.

Summer came and went and no thanks to someone out there….our address was leaked to the mosquito community..and they came…not only did y sent the children but aunts, uncles etc…you get the picture.  If you had stock in the mosquito spray company you did well.
We also spent lots of time staying cool.  Seems the summers are getting lots and lots hotter where I live or maybe just me
Septermber came…sadly…and my best friend Olive Clayson passed…I cried and cried and then cried some more.  She was an important person for so many of us mastocytosis people.  Not only was she a founder of the Mastocytosis society but her knowledge of our disease was so important…she encouraged many when they seem not to have a bright day.  She researched and kept up her data base of knowledge to share not only with us patients but lots of doctors as well.  I cried and I miss her phone calls and her emails and her jokes she played on me and I cried.  
Then we had Thanksgiving…and I had to really think about something to be thankful about…hummmm  oh I know…I am thankful that I have a small bathroom.  Now I know many of you have this big beautiful one but mine is small BUT I can always hold on to something or if I need to climb in the tub there are my hand bars…and if I need to bend over..no problem there is a …something…to hold on to…yes I am thankful for my small bathroom…
Well Christmas rolled right up on the calendar… and since daughter was going  of state on a dog sitting assignment we had it early…she was going to be gone for some weeks so we decided that was best…and guess what I got for Christmas….BACON…BACON…BACON…as well as sausage and chicken tenders…but the big prize was BACON…did you ever wonder why bacon is so good but maybe not good for you and who cares and I learned how to …BAKE BACON…now I urge you to go to youtube or somewhere and read how…it is wonderful and this house may never fry bacon again…
I looked at the calendar again and realized….I WILL SOON BE 84 AND HOPING FOR MANY MORE…that’s right my birthday is coming up soon.  And here we need to talk a little about getting older…
Getting older means lots of things..it means that I am starting a petition to all companies that make plastic storage and freezer bags..that they no longer put those little slot things to close the bags that they go to the zipper type only.
That ALL bottles  including ketchup  have easy to open lids.
And am looking for a fork that has sideboards so that you can eat peas without them falling off into your lap…lots of important things to tend to when you get old.

Now Mary “my neighbor who lives across the pasture” have been doing some humming lately…now Mary is doing great after her big cancer bout I am so proud of her..I truly believe that her attitude brought her thru this bad time…but back to humming…well see I read this article that says when you forget the word you want to use…you just hum…works for us.
I wish I could tell you that my sight is not getting worse but I cannot…REMEMBER “gentle eye doctor” telling me that I was not going blind…however he did not say ALMOST…I am still able to color for which I am so thankful…it does require me to use bright light and closer to my eyes and that is ok because it brings me great joy to color and share with others…
Not being able to see to cut your toenails is a bummer…I remember going to see my dad in his last years…dad was a proud man..but he did ask me to take my big clippers and cut his toenails as he could not…I remember that and how hard it must have been for him.

Here at the farm we are getting ready for spring and the stormy season to arrive.  This year we have a rather large group of “meadow larks” had not see any of those in a couple of years…lots of cardinals or redbirds …and we have a new kitten/cat…she is a wild cat but she likes son and they are trying to get friendly..he calls her …sweet pea…Ranger gave her several life lessons while she was still very small…how to climb the tree and stalk a mouse…he is still going off for days and days on some secret assignment…and he may have recruited Sweet Pea into the service as she is not here this morning as she never leaves the yard…we are hoping that she is not in trouble..

Oh oh oh..how could I forget..I have a gentleman friend online..he is a sweetheart…he sent me a “scarlet pink Moster Minky throw” for Christmas …we talk every day…and he is my friend Olive’s son Steve…he is such fun…we talk about the weather and the snow he sometimes wants to send over the mountains to me…and his wonderful sister Mary Ann who I love dearly make days fun.

Well think that is about it for catching up…I will try to do a better job…
Love to you all

The word writer Cheesy

“getting old is not for wimps”

6  General Mast Cell Disorders Discussion / Mast Cell Disorder Doctors / Re: How to get an appointment at the Center of Excellence for Masto in Boston: Dr. Akin and Dr. Castells
 on: 11/11/17 at 12:26:16 
Started by DeborahW, Founder | Post by Sunny  
Dr. Cem akin is now back in Michigan.  I have an appt. in December

7  General Mast Cell Disorders Discussion / Mast Cell Disorder Doctors / Re: Columbia, SC Allergist
 on: 07/04/17 at 06:47:46 
Started by CindyP | Post by Rick  
Hi Cindy - I was on Sprycel for about 4 months, 3 at 20mg and 1 at 40mg.
At 40mg some of my symptoms subsided but my tolerance of the drug decreased until I decided to quit. Once the drug was eliminated from my system I coasted for a couple months feeling better, but that wore off and I am back to where I was. My story is a long one, so I'll save the details for another time. I was pretty sure I had a mast cell disease for many years before being dx by Dr. Afrin. I found another Dr. by calling around, I wasn't specifically looking for a hematologist who treated MCAS but one who was interested enough to look at my case. I found Dr. Tanna and she contacted Dr Afrin. I have tried both Gleevec and Sprycel. Both help but my tolerance declines over time.

I contacted Dr. Afrin and he recommended a third drug Sunitinib, which is related to Sprycel so I will make an appointment with Dr. Tanna and give it a try. Also he told me about Tofacitinib which is a drug to treat Rheumatoid arthritis.

Best wishes,


8  Blogs / Blogs / Re: redbird's blog and stories
 on: 06/04/17 at 05:26:16 
Started by DeborahW, Founder | Post by redbird  
A new medical journal out with a report that CHOCOLATE CAN PREVENT HEART ATTACKS…now I did not read any further about moderation or amounts or how often I just let the headline make me feel good.

Now you have read about …I am a coffee drinker...now here in our town we do not have a starbucks...we barely have a red light..but I still manage to deal with my coffee drinking..I don’t have one of those fancy one cup things nor do I want one..this week I decide to be a “FOLGERS BLACK SILK” drinker… my coffee container was down really low..and have you noticed that the size of those things have gotten smaller as the price has gotten higher…those folks know that we drinkers will pay the price and we do…home and made that first cup…hum yumm and darn it just was good.

Well lots of stuff going on at my house and the farm…
First I will tell you that our fridge…you know the one daughter bought for us a little over two years ago..you know the one that was POSSESSED…we were sure of that with all the strange sounds it made …we were so use to the sounds that we forget to notice however visitors made comments in regard to them and we just nodded and said..it’s possessed…we just said it is the spirits…
So one day last week the fridge started acting sick…yes sometimes the top would freeze and the bottom would not cool and sometimes it was the other way around..son who has his cert of a/c refrigeration worked on it and it would improve for a day but the interesting thing is…IT STOPPED MAKING NOISE… yes it would run but no noise..we both commented on that as it sat silently   in it’s spot…BUT in a couple of days I heard this noise in the son’s bathroom..it sounded just like a smoke alarm…so I am in there searching everywhere for this noise…finally I mentioned it to son…oh mom he said..you will have to flush the commode for it to stop and I did and it stopped…has the spirit moved to the bathroom??...well on further examination son decided that it needed new insides…so he did and the noise stopped…where will it move next??
We still have the fridge problem… just so you know SEARS appliances are only guaranteed   for a year…unless you buy the expensive extended warranty…so son is thinking we have this old fridge in the garage…I have tried to think how old it is..and I am past 25 years..we had bought it for a replacement in the travel trailer when that one stopped running… we could use it as a replacement until he can look over the newer one…
So…son is out in the garage with the bleach stuff and scrubbing…now you have to think small..like in small… and would it run?  Well all cleaned up and plugged up that little fridge said (just like the little train…remember that) I think I can…I think I can…and it did and is…it is now sitting small in the big space in the kitchen and running like …it should..now stuff is pretty crowded and we will have to think more on stuff like…well this could go in the cabinet…BUT I am proud of this little brave fridge…son says it is not a fridge it is an ice box…just the next step up from the old ice block and drip pan…but I am grateful…got to get my important papers stuck on the outside…that’s where I keep things I need…
Son got into a fight….yup he did…with the vacuum cleaner and son lost..big time…he keeps the floors in the house clean, mopped etc and the vacuum sits in his bedroom..now he had used it as a door prop and coming from the bathroom in the wee hours of the morning…he forgot it was there and the vacuum landed a deadly punch to his foot…more than an ouch..it was a real blow… now I thought his foot was broken..he could not walk on it… so I loaned him my walker for getting around …he thinks it is just bruised bad…but it is better…round 1 vacuum..
The farm is getting more visitors …we now have 4 cottontail rabbits…one is a little little one…watched as the mom rabbit herded it around the yard…she would nudge him to turn etc…it was fun to watch…
And the roadrunner is back…now he likes to fly up to the top of the big bird enclosure and hide and he blends right in with all the branches on the top…waiting for a breakfast bird..so I took my  yard walking stick which is a old mop handle…and went out for a chat…he noticed me right away and raised up from his hiding place…I shook my stick and he got the message…breakfast bar is closed..

Well I am still doing …”Painting by Pencils”…and my Flower Mission Series is going out to people..if you need one please email me at  coloring@pldi.net

The word writer Cheesy

“getting old is not for wimps"

9  Blogs / Blogs / Re: redbird's blog and stories
 on: 05/20/17 at 03:33:16 
Started by DeborahW, Founder | Post by redbird  
So you are asking…did you get blown away with all the storms..in your area…NO but we did get winds like I have never seen in all the years that I have lived here..like in 40 yrs..and of course the rain and hail..rained so hard that you could not see my friend Mary’s house…across the pasture..morning brought light and viewing the farm…oh that is one of the big trees laying down in the yard…and that spot has limbs that are twisted and tore from the  oak tree and placed in the clothes line..humm…BUT THE FENCE REMAINED UP…HURRAH!!..the town about 25 miles away from us had winds up to 104…and we are just straight down the highway..so have not heard what arrived at our place..and of course we lost power..right at the start of my once a week TV show and I currently do not know if they escaped the fire …so later this week will have to check out the computer for looking..
Now my rain gauge in the front yard is showing 5 inches of rain but we are sure that more than that fell because at 5 it is full..but don’t worry..we sit up on a little rise and too we have a boat in the back yard…if we can just figure out how to plug the hole we should be good..aon has just informed me that the expected COLD FRONT has hit and the winds are now out of the north..that blanket you took off your bed..well back on

Well Ranger the warrior cat has been very very ill…for 3 or more days he would not eat and finally just a couple of bites…since this was before the storms..he slept in the yard…in the open so that you could certainly watch and check on him..he would not stay in the house…no amount of coaxing …if you got him in he would come in the back door and straight out the front door..finally one morning he was waiting for me to get up and as soon as I saw him I went to the door  to see if he would come in…and he did…as I was fixing his breakfast he sat in the kitchen in a new spot from his usual eating area..finally as I got his meal ready I put it down and he just looked at me…ok ranger here is your breakfast…and he looked at me and then down at the floor in front of him…several times before I got the hint…I WANT IT HERE…and I put it there and he ate…so we have moved his eating area per his request…and  he is almost back to eating..normal…I just happened to get him some of his favorite fried chicken from the deli..and boy I was a hero..so we are hoping for the best..BUT his new thing is…wherever he plops down for his nap…you do not disturb him..if you past his area too much..he will raise his head and scold you loudly or if you speak loudly..you get the same treatment…so as you can see…we are all walking in our sock feet and whispering or not talking at all..we have not gotten to the writing of ..passing notes but if need we can do that as well..

Well my coloring has entered a new phase …no longer am I doing adult coloring..I am now doing “Painting by Pencil” and I am now doing my “Flower Mission Series”….LOL LOL thought that would give you a good laugh..and heard about a lady that is sending out hand written notes  to breat cancer patients..I am going to email her and see if I could send flowers pictures and also want to see if my friend Mary would like to do this as well…as she loves to hand write letters …

well not much else going on here at the farm…so until next time please stay safe and well…

the word writer Cheesy

"getting old is not for wimps"

10  General Mast Cell Disorders Discussion / Mast Cell Disorder Doctors / Re: mast cell doctor around Atlanta
 on: 05/16/17 at 12:30:28 
Started by Rick | Post by Rick  
I did find a Dr who was willing to take me on as a patient. She consulted with Dr Afrin and prescribed Gleevec and then Sprycel. Unfortunately I eventually became intolerant of both drugs. Sprycel looked promising but after 4 month I could not tolerate it. I was allergic to it.

The Doctor is Dr. Saloni Tanna at Northeast Georgia Diagnostic Center in Gainesville, Ga. I found her to be very bright and willing to do the research to become familiar with mast cell disease.