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 Post subject: Anyone Heard from PurpleTulip lately?
PostPosted: Sun May 18, 2008 10:12 am 
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Just wondering. Haven't seen her name on here. I know she moved out to Colorado.


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Sun May 18, 2008 12:04 pm 
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How amazing I was just thinking of her yesterday, she has posted 8 times here at the new forum since February. Kayday is another one we have not seen since the old forum. I even tried to email her, no response...I am worried. Megsmom - Julie R - I have to email her again, she will email me once in awhile, but it has been too long. Last I heard she was on IV nutrition and down to 89 lbs. Ohsotired - Debbie became friends with Julie. Julie notified me when Deb collapsed and was hospitialized in ICU unresponsive about a year ago...I did hear she got out and was getting new treatment.

Lots of former members I am worried about! Although I know Purpletulip just must be busy? Lets pray.

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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Mon May 19, 2008 7:08 am 
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So was I!!!

I am so amazed that she is doing so well - especially since she took that trip to Africa. I hope she is still doing well.

The reason I've been thinking of her so much lately is because she is my idol for being able to take that trip. My husband, daughter (and maybe FIL if he recovers) are going to Italy for 10 days on Saturday. I just didn't feel I was up to the trip and knew it would set me back.

Although I'm finally feeling well these past few days I still need 10 to 12 hours of sleep everyday and I just couldn't keep up with touring. And they get to go to a cousins wedding on May 31! All of my FIL's aunts, uncles and cousins are Italy so we have a lot of family there. I am so excited for my daughter and hubby and I know that next time I will get to go, too! You may see a lot more of me next week as I'll be on my own (staying with my twin and her family, though for a few days - literally moving in, ha ha)

Molly

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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Fri May 23, 2008 8:00 pm 
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Hello Everyone,

Sorry to seem as if I were missing in action. I am doing fine. I have had two other antibiotics added to my protocol and that has been an adjustment. Apparently, I have this pneumonia hidden in my system. I had a hard time believing that it could be true since I have never had any respiratory symptoms. But the blood test seemed to indicate that I was hostess to this other monster.

Two months ago I added azith and then a little more than a month ago INH was added. I herxed like crazy for a weekend and then ached on and off for a time. And lo and behold the hidden pneumonia started to rear its ugly head. I have a heaviness in my chest and a wheeze with an unproductive cough. On Monday Wednesday and Friday when I take the Azith, my nose runs. Go figure. I really do have this Pneumonia. (Molly, they test for this at the Fibro chronic fatigue clinic as well.) But I am doing well. In fact, please do not respond to this post with a lot of sympathy. I have been reading what you are all going through and this is nothing.

I am very tired however. I am not sure if its the antibiotics or my body fighting -- since the sleeping giant has been awakened, but I am tired. I still have a part time job and two teenagers at home AND my husband travels alot. He is currently in Moscow and will finish his travels in France and come home at the end of the month. At the end of the day (when I finally get a chance at the computer) I don't have the emotional energy to write. So I have been reading only. I do apologize, but I just see what you are all going through and . . . just don't know what to say.

Tonight after a long week I have some time to write. Yikes with all she is going through was very sweet and caring and wrote me. Thank you all for caring.


Last edited by purple tulip on Sat May 24, 2008 6:46 am, edited 1 time in total.

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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Fri May 23, 2008 9:06 pm 
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Dear Miss Purple,

I am very glad to hear from you! (TY Yikes for knocking on her door!)
I was hoping you were in the wings staying connected even if in 'view only' mode; but I was thinking we did not hear from you b/c you were doing so well. I promise no sympathy but ALL empathy!! :console:

Its good for us to know that you are 'here'; we can float ghost notes to you and you won't have to feel like you need to write. I am sorry that you are battling the pneumonia, M. There are several others who are along the sidelines absorbing and reading, some also weary but just watching b/c they want to be in the midst.

You are just a very precious part of our family here and when you are gone for long periods, we feel like a part of us is missing.

It sounds as though you are in the hands of good care; I hope you are confident in the doctor you have found there. And I pray that your children are doing well. Your husband - his mission work - sounds like he is gone alot. You are on the countdown week for his return. When Bear traveled extensively, I remember well the countdown! I hope he can be home for awhile so that you can enjoy his support and help on the homefront.

I suspect you can relate to one of my recent short devotionals. I know you will understand and I share it as your sister in Christ and in hope because He is......I know you know it well.

2 Corinthians 4:7
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.

This little daily spoke of our human limitations. How we reach times (sometimes long periods of time) where we fall into seasons of hunger, hurt and exhaustion. We know we are not self-sufficient because the Lord has shown us His grace and given us the power of His Spirit to grasp His will and 'way' in us, but we are weary. We know He invites us to come in any condition for a renewing of His Spirit in us.

In those times, He helps us learn (each new day that we have with Him), how to rely on Him in all of these places we find ourselves. I am in awe of how His Spirit moves. I may not walk away feeling like I fully accept or get it; but, He moves me closer to Himself and further from the circumstances as I let go of it (yes, sometimes it looks like a wrestling match - how embarrassing to finally remember to look up and see Him just to face the overwhelming sense of "I'm sorry, I forgot that you really are alive and here to guide and lead!) :faint:

When I think of the strength the eagle was created with and how it can soar on the wind currents, I thnk of how light His burden is for me (for us) when I am able to lean into that kind of available power, even in the midst of much. Treasures in jars of clay. His inner peace. His Spirit within. His rock solid root to hold us firm when the storm blows.

I love that we get to be His clay (most of the time) and that He promises so much beauty in the molding and making; that He Himself is 'in there' just waiting to renew us from the inside out. He promises to make all things beautiful in His time. I'd really like to be beautiful for Him.

When I am so very tired, M, so very afraid, it helps to know that as sons of God, we are covered. I hope it helps you to know, too, as you wait for your hubby to come home, as you go to work, as you love your teens and as you look for Him to give you rest. I'm so glad you know Who you belong to!

In His love,
~d

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He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. Wait for the LORD; be strong and take heart and wait for the LORD. Fear not, for I have redeemed you; I have called you by name; you are mine... When you pass through the waters, I will be with you; the waves will not overcome you...For I am the LORD, your God, the Holy One of Israel, your Savior www.stylebyheatherrose.com


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Sat May 24, 2008 6:52 am 
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Thanks, Sojourner, for the thoughtful reply.


If I hold up, we may be traveling all the way Greencastle the 3rd week of June. Perhaps we can meet? I haven't been to "Ship" in years.


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Sat May 24, 2008 6:53 am 
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Oh it is so good to see you.

Though I've been through a rough patch myself ... I have thought of you often.

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The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31
http://www.jmgarnet76.blogspot.com


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Sat May 24, 2008 7:34 am 
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Puple Tulip and I are kindred spirits. I too wax and wane here, sometime just observing from the sidelines without the energy to jump in. I think it's important for us all to remember -- I have to tell myself this a lot -- that we don't have to weigh in on every post, every crisis, even every celebration. I know sometimes when someone posts a significant and moving response, I feel my piddly response seems empty in comparison. It's all good. And we should all know that there IS a contingent out there lurking and reading and being nutured by simply observing. ~~ Yikes
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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Sat May 24, 2008 11:29 am 
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Hi Miss Purple,

We will make our whirl trip to CT for Dr.J. and Dr.B on the 18th, 19th and 20th of June. One day to drive up, two appointments, one day to drive back.

Will you be here earlier in the week? I would love to see you! It would be great for you and Heth to meet, M. I know you would be a blessing from the Lord to her heart!

Y'know we're like the city now. We have WalMart! The changes will surprise you and your husband. Over 4,000 homes projected over the next couple of years. Alot of communters from the D.C. area now. You will see less rural as you once knew it; some things will still be in their foundational historic place though. It will be quieter b/c the University will have graduated and the kids will be all have returned to their home turfs.

I am around the corner and up the street from your roots in ministry. Remember James Burd days? There is a new 'intermediate' school back in the 'field'. You have experienced much of life since those days as a small town pastoring team.

It will be my privilege and joy to meet you. Do you have any friendships that you've kept here, folks that you would like to say hello to?

love,d

_________________
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. Wait for the LORD; be strong and take heart and wait for the LORD. Fear not, for I have redeemed you; I have called you by name; you are mine... When you pass through the waters, I will be with you; the waves will not overcome you...For I am the LORD, your God, the Holy One of Israel, your Savior www.stylebyheatherrose.com


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Sat May 24, 2008 3:14 pm 
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Hi Merylin,

So glad to see you!! Pneumonia -my gosh - how can that stay hidden? I know staph can, how did they test you and what made them even think to test you?

Wow, bacterias never cease to amaze me...this can be crazy!!

What is INH?

So sorry you haven't been well, but glad they may be getting to the root...this makes me wanted to get tested, but how? Is there a specific test? I thought something like pneumonia would show up in a CBC, WBC?

Love and have missed you so - I pray you regain strength and energy soon.

Love,
Dana

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Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
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Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Sat May 24, 2008 3:18 pm 
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Merilyn: Yes, Dar and I were tested for everything under the sun there. I had high titers for Clamydia Pnuemonia and my sister had Mycoplasma Pnemonia. They often go hand in hand with Lyme. I think that's why I herxed so badly in the beginning with my Doxy - I was killing so much stuff! Then the lovely Dr. M accidentally had me on a double dose of Doxy for the first 10 days. WOW what a ride that was.

Well, the more stuff we kill the better we will feel.

So happy to hear from you.

Hugs

Molly


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Sat May 24, 2008 5:52 pm 
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Thanks for all the kind posts.

Yikes, thanks again for checking in and for understanding and stating things so well (your post below).
Cog, I had blood work done in the Fall and while they were doing routine tests, they apparently ordered the testing of this bacteria. I had not complained of any symptom that put them on the right track, they just know that lyme collects other bacteria. My blood titers were high.
Molly My titers were high as well. I thought that perhaps the lyme drugs would get rid of it, but no. You need to be on a certain protocol to get the different forms just like lyme. There are two different protocols out there. They are the Stratton and Wheldon protocols. The drugs used as similar to lyme so adding the two new antibiotics completed it for me. INH is Isoniazid, a drug formally used for TB.
Sojourner: I am unsure of the dates yet. But we may be able to meet later that week.
JM I have been following a long and know that you have been through a rough patch. I'm sorry to hear that. I hope you are doing better and that the springtime has made you feel more hopeful.


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Fri Jun 06, 2008 2:31 pm 
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Hello Everyone,

I am writing you from Wheaton IL. My husband and I are at a conference. Believe it or not we drove from Colorado Springs via Mt Rushmore! I have to tell you, I can ride in a car much better than before, but long car rides still get to me. I was so achey. It used to be after 2 to 3 hours I was spent, I can make it much longer now, but a day in the car is still tough.

We are here for a week and a half and then on to PA. I hope to connect with Sojourner (sometime after the 17th?? I'll let you know D, when I know more). I am hoping the week break before the travel will help. It will not be as long and tough. I can't imagine how Heth and others travel to their docs. I could barely make the hour ride when I live in Michigan. I am, however, grateful that I am doing as well as I am. There is something about travel that is tough.

Gotta get ready for the evening meal.

PT


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 Post subject: Re: Anyone Heard from PurpleTulip lately?
PostPosted: Fri Jun 06, 2008 3:04 pm 
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Dear Miss Purple,
I am not sure if you saw my earlier reply to your dates for PA; but, I am hoping you will be able to log on as you approach the Keystone.

We leave on the 18th, drive all day up to CT, see Dr. B (ND) on the 19th, Dr. J the morning of the 20th and then drive all afternoon/evening to get home late.

How long will you be able to be here??
I am going to float a PM to you now w/our home phone number and my email here.

I am glad you are managing so much better. I hope that when you are able to stop, you are able to rest comfortably. Heth is not able to appreciate or enjoy traveling b/c of all that is unspoken. But, one day, she hopes to.
For now, it is challenging esp. depending on pain load.

I appreciate your sensitivity and understanding of that. She will, too.
I'll look forward to hopefully seeing you, M.

In His love,
D

_________________
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. Wait for the LORD; be strong and take heart and wait for the LORD. Fear not, for I have redeemed you; I have called you by name; you are mine... When you pass through the waters, I will be with you; the waves will not overcome you...For I am the LORD, your God, the Holy One of Israel, your Savior www.stylebyheatherrose.com


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