Yorkieville Needs Prayers

[monotreme]

Hi everyone.  I spoke to Sheila today and she is in Cleveland.  They are at a campground that does not have internet access, though they advertise they do!!

Her G.I. doc at home said that she has neurological bowel and said that Cleveland Clinic will know what tests to run and how to treat it.  Well, so far, that is not the case.  The CC  G.I. doctor is very alarmed that she has lost 18 pounds in four months.  However, she will not run nerve tests, and is pretty much making Sheila have all the tests she had done at home RE-DONE at CC.  She would not even look at the test results Sheila brought with her.  (When Craig was at NIH last Fall, the doctors in the EMG room were joking about Mayo and CC and how they only accept Mayo, CC, and NIH test results.  CC doesn't believe in accuracy of other hospitals etc.).  

She is having a colonoscopy done tomorrow.  The prep test is wearing her out and quite painful with alot of abdominal cramping.  CC would not admit her for fluids or any kind of IV nutrition.  She was hoping they would.  Her veins are collapsing with all the sticks they are getting.  She has had a few other repeat tests and one new one.  But no nerve related tests for the bowel problem that she had hoped to have.

So I let Sheila know that I would ask her forum family to pray for her.  She is very discouraged, and rightfully so.  I am hoping that by the time she re-visits the GI doctor at CC on Friday that they will have some kind of answer for her.  If you could remember her in your prayers, she would appreciate that.

Thanks,
  Elaine

[yorkieville]

Hi, Ada!

Will we realy be neighbors, close enough to visit? That would be so wonderful!

Thank you, our Agent is coming by this week to discuss the possibilty of lowering our price by $5,000. to open it up to a different bracket of buyers.

I think the move would do me good, too. I spoke with my son Tuesday eve and he wants us down there so much!

I am going to keep Methodist in Omaha in mind, if I don't get any real help in S.IL, but my neighbor lived in S. IL, and she said there are doctors in St Louis that are wonderful, and she feels I will get help there. From her lips, to Gods ears.

I love you, too, Ada.

Sheila

[spastic]

Hey Sweetie, I've been thinking about you.....You know when you move to S. Illinois, we'll be neighbors!!!!  hehehe  I hope your house sells soon for you, I also think the move would do you good.  

My Uncle was in the hospital for a paralyzed bowel at Methodist in Omaha and the Dr's there were great.  My Uncle is a retired physician and he swears by Methodist.  It might be worth a drive through Iowa to see if one of these Dr's could help you.  

I Love You Sheila,

Ada

[yorkieville]

Hi, Sunny!

Have I ever told you that your screen-name always makes me feel happy? :)

I hope you had a great vacation. You deserve it.

Thank you so much. I spoke with my son last night and he is praying for a healing and I also asked that he and my lovely daughter-in-law pray our house sells fast. He made me promise to get well, and I promised, and reminded him that I have never broken a promise to him.:)  I have this feeling, deep down inside, that when we move to S. IL, I will find the right doctor, and I know being around my son and his wife, and my twin grandsons will really help me.

Rich is waiting for me (what else is new? LOL)

But I will msg. you this eve.

Hugs & Smiles,
Sheila

[Sunnytoday]

Hey there, good to see you back on (course, I was out for vacation for a bit there)
You know that you are always in my prayers.... may you have happy house-hunting and find a caring doctor just as fast. :)
feel free to msg. when you get the time
~Sunnytoday~

[yorkieville]

Farrah, you do not look 32, you look 22!!! You're gorgeous, girl! I didn't know that Tramadol came in drops. I am definitely going to ask my D.O. for the drops.

How did you get your AS diagnosis? My D.O. ran the HLAB-27 test and it was positive, but the spine specialist said "No AS" so, not sure who to believe. The spine specialist explained that the pain in my back is not from my back, but from the nerves. He was right, a Medial Branch Nerve Block relieved my pain for 6 hours, but a Right Lumbar Radio-frequency failed. (:

Diazepam & Tramadol ease the nerve pain, to a large degree, but I have to stay on top of the time.

I tried Lyrica but when it wore off, the nerve pain was worse than before I had taken it, if that makes any sense.

No, you still have to pray for yourself, besides others, because if we don't pray for ourselves, God can't hear us.

I believe He will grant me an answer to my prayer, but I believe He is showing me where He wants me, and that is down in S. IL with my family.

I have a son that will be 34 in September and we are very close and he and his wife want us near them and the babies.

I just spoke with him on the phone and he made me promise I would get down there and get healthy.

I have never made him a promise I couldn't keep.

I believe God led me here, too....this group consists of the best people on the earth. I never knew I would love so many people that I have never even met.

With that, I will give you my love and hugs, and this old woman is off to bed. :)

Sheila

[Farrahlicious]

Don't be cheated by the pic, it's photoshopped! lol, nah, i'm 32 and looking it.
You know, i only take the Tramadol in drops, they taste like Jaggemeister but if you mix them in a tiny cup with a little bit of lemon soda (i have tried everything, juice, other sodas, etc) it's not that bad. I only take about 20 drops (10mg) when i'm desperate. I have been diagnosed with AS for about two years, and was working and going to school at night, so i HAD to learn to handle the pain.
Honey, please try to get something else for the pain. It's too much. Tramadol in pills don't work for me, so i do the drops.
I need to pray more for others and not for my poor behind. I'm ok, i'm not needing anything really bad (except for the daily Levothiroxin) but nothing else. I take Lyrica, because it makes my neuropatic pain better, but i also take my vitamins, 5-HTP and plenty of biomeds (Heel) and Bach Flowers and Homeopathy. I believe in G'd to a point that there is nothing coming from Him that i won't believe He may grant me. When He calls "Farrah" i say "Here i am". He'll help us all. He has brought us to this wonderful forum. I'm glad i had questions and doubts and look the miracle i found! all these lovely people!
Hugs & blessings!
xoxoxo
Farrah

[yorkieville]

Hi, Kristin.

   Thank you, Kristin. I appreciate the prayer so much. I firmly believe, some one knows what is wrong with me. I just haven't met that person yet. I just continue to keep asking God to guide my doctors.

  Hugs,
  Sheila

[yorkieville]

Hi, Farrah!

Thank you! You are a sweetheart, too! You know, it breaks my heart that younger people than me are going through so much pain and no answers, no relief. They're being cheated out of their lives.

Don't you experience any withdrawal symptoms only taking the Tramadol when you need it?

I'll tell you how I found out what was causing me to be very nauseated every morning. Last month, I had to do a 14 hour fast for a 24 hour urine collection for heavy metals. I cannot tolerate the Tramadol on an empty stomach, so, I didn't have it for 17 hours.

After 14 hours, I was shaking and cold and dry-heaving. My hubby had to wrap me in a down comforter, bring a portable heater into our living room, and close the French doors.
I finally fell asleep, and woke up hungry enough to have a cup of coffee and two tiny flaky pastries, just enough to take a a 50 MG. Tramadol and 2 MG. of Diazepam.  I felt a bit better, but it wasn't until my next dose, that I felt normal again.

I had been taking one 50 MG. tablet at 8:00 a.m., 2:00 p.m., and 8:00 p.m.. So, after that experience, I began setting an alarm clock for 2:00 a.m., and guess what? No more nausea in the morning.

I had also been waking at 4:00 a.m. with back pain, but had felt I could tolerate it. The nausea was another matter.

I've been on it for 9 months, so I'd say I am very addicted.

You are very welcome for the warm welcome. I also received the most loving warm welcome when I came here. That was the day, I stopped crying. I found a family here, of people that truly understand.

It is truly a joy to have so many people lift me, when I am struggling.

Love & Prayers to you, as well.
Sheila

[yorkieville]

Hi, Santana.

   Thank you so much, and, you ARE doing something to help me feel better, you offer support & prayers. These are the things I need most, right now.

Hugs,
Sheila

[floridamom2]

You are always in my prayers but especially now.  I hope and pray you get some answers soon dear!!
Love and Hugs!
Kristin

[Farrahlicious]

OMG, you are a sweetheart! it hurts my heart to see all these good souls going thru such a hardtime. I am on Tramadol myself, but i use it only for emergencies. I could not imagine taking it every 6 hours.
Thank you for the warm welcome. Remember, when the L-ord is not carrying you in His loving arms, we are. We're always here.
love and prayers,
Farrah

[santana8]

I am so sorry you are going through all of this, I wish I could do something to help you! I am thinking about you and keeping you in my prayers until you are feeling better! I will be watching for updates about how you are doing.

Hugs,
~Santana~

[yorkieville]

Hi, Farrah!

Oh, I so agree, I truly believe in the power of prayer. My favorite poem is Footprints, and I know, many, many times, the Lord has carried me, and I know, He is carrying me, now.

"Proper" introductions are never necessary in this group, we are all family, from the minute we join. There is no better place on the 'Net, than this one.

Thank you so much for your prayers and good wishes and good vibes and love. I'll take these things over everything and anything in the world!!!!

I wsih I wasn't on drugs, but I take Tramadol, every 6 hours, round the clock, or the pain in my lower back is so great, that I am unable to sit up, stand, or walk, for more than a few minutes. I spent nearly two years, on the couch and bed, before my D.O. prescribed Tramadol and Diazepam, and the Diazepam has relieved the pain in the nerves in my spine and the Small Fiber Neuropathy in  my legs and thighs. These two drugs have given me part of my life back. Now, I am greedy and want the rest back, as well. :)

There is no such thig as a 'stupid' sense of humor. I would rather laugh, than cry, and so many times, if I did not laugh at myself, I would cry.

Love & Hugs,
Sheila

[yorkieville]

Oh, Rena, my dear friend, don't you dare chastise yourself for talking about the way you feel! Your health issues, and everyone's here, are equally as important, as mine. Many are far more serious than mine.

You NEVER whine, and if you do, you are entitled, and I will wine with you and bring the cheese! :)

Rena, I adore you, so you can wine & cheese with me, any day of the week!

Love & Hugs,
Sheila

[Farrahlicious]

Prayers, prayers, prayers!
I'm sorry i haven't introduced myself properly, but all i can say is that i won't pray for you to move or for this or this other test. It's all gonna be praying and good wishing and vibes and love for you to get BETTER. No more Limbo!
Faith is so strong, dear. The power of prayer can do a lot. I'm not on any drugs, i'm like a drug myself (like a bad trip), i just medicate myself with prayers. And a stupid sense of humor. But seriously, love and good thoughts your way!

xoxox
Farrah

[Rena705]

I am so sorry to hear of all of this anguish you have been going through and I certainly hope that the move will prove to be a new beginning for you and your hubby.  I have to say that you have been through a lot worse than myself and I must apologize for "whining" about my situation when you have been going through your own personal he**!  I will be thinking of you Sheila and I wish you and your husband the best and I hope that the next post we get from you is to tell us that your house has been sold and you are moving onward and upward!

Best of Luck and lots of hugs,

Rena

[yorkieville]

Hi, Angels.

I'm sorry it has taken me so long to get back in here. (:

We came home from our trip to the State Park, Thursday afternoon.

It was good to go there and just sit in the peace and quiet, and think. Although, last weekend, as we were getting ready, I wondered at our sanity at going ahead with the trip,  after just getting back from CC on Saturday evening. Believe me, all I could manage to do was sit in my reclining lawn chair. I was soooo tired, my back pain was unbelievable, even my Tramadol every 6 hours round the clock didn't get it under control for a week, and besides recovering from the tests, I was getting over one of the worst colds I've ever had in my life; courtesy of my neighbor. :) Her Hubby had been in the hospital the week before, and she caught a terrible cold. We share everything. Food, visits, prayers, colds, etc. LOL

Poor Rich caught it, the beginning of the week, so he spent his nights coughing up a storm. He barely slept, and when he did sleep, he snored as loud as a bear! LOL  He never gets sick, but oh, boy, when he does, he really gets sick! I was really worried about him. I've been pouring orange juice down his throat, and chicken noodle soup, and shots of Brandy. Good Polish Brandry; LEROUX JEZYNOWKA Blackberry. Works better than any cold medicine we've ever taken.

Rich and I spent time, discussing things thoroughly, and we believe moving to S. IL is our best option, and we are both praying in earnest that it will happen within a month.

We are selling our house without a contingency on finding a home, which Buyers in our area seem to like, and we will live in our travel trailer while we house-hunt in S. IL.

I cannot begin to thank you for your prayers. And if I may ask, please continue to pray. I have 18 month old twin grandsons, that I want to stick around and watch grow up. I absolutely adore them! They are a dream come true for me. A prayer answered. I have dreamed of having grandchildren from the time I was carrying my son, 34 years ago.

The only mention made of nutrition at CC was to drink 3 Insure or Carnation Instant Breakfasts. Sheesh...I'd already been drinking the Carnation.

Dr. McNally said to weigh myself every 3 days and call if I lose any more weight. What?18#s in 5 months isn't enough weight loss?  I'm 5'2, and weigh 72#s, how little do I need to weigh before they feel concerned?

I'm drinking Carnation Instant Breakfast Dark Chocolate 3 times a day. And I am truly making an effort to eat calorie dense foods.

We bought our St. Joesph Statue today. I remember when we had a difficult time selling our last house, we buried a St. Joseph Statue and our house sold within the month.

I am waiting for Dr. McNally to send me the report on the blood tests results she did not have back yet, and the defogram, that I brought the films with me to my appointment on Friday that she said did not have time to go to her office to review before my appt. (: I don't understand the point of the appointment, when she didn't have time to look at the films. I was instructed in gastroenterology to make sure I took those films to my appointment.

Elaine, thank you for telling me I can call Patient Relations at CC and tell them I want to file a complaint. Because I am so irritated that we made an expensive trip, that we can ill afford, and they did not bother to inform me that they do not do the Anal Electromyography test. I was very explicit and stated in my request for an appointment that my G.I. Doc diagnosed me with a Neurological Bowel Problem, and referred me to CC for nerve/muscle tests on the anal sphincter muscle. I also stated that I'd had a Dynamic Proctography that showed I have no bowel function.

Unless that Defogram shows something, I wwould have to say my trip to CC was an extreme waste of time and money. :(

So, I remain, "Living in Limbo Land".

Hugs,
Sheila

[LLWB]

I'm so so sorry that the CC was so ignorant of your basic needs. People should not be treated just as a number, and I think it was criminal to just repeat tests, and not even look at info your brought. That said, enjoy your trip, and allow the Holy Spirit's healing hands to settle on your body and spirit.

I'll be praying incessently for your health and recovery. Maggie

[Fluffysmom]

I'm adding my prayers to the rest, that you sell your house and find medical care that actually helps and everything else that you need in your life.

sending you soft, gentle hugs along with my prayers,

Kathy

[biowham]

Wow. That sounds like an enormous waste of your time and health. I have you in my thoughts for a quick sell and a move sooner rather than later. I do not like anything I hear about CC. Nothing at all. Sometimes, these places that are supposed to be so good, so tops, end up being so overrun with bureaucracy that you can't find the people underneath all the paperwork and red tape.

And everything that Elaine said. Seconded.

Get well, work on relaxing, work on keeping your weight healthy.

Bio

[Want to feel well!!!]

Sweetie, all I can say is I am still praying and wishing you well.  Just know your forum family is behind you all the way.

Please be well soon!!!!

(((Loving Gentle Hugs)))
Wanna :o)

[monotreme]

I am very disappointed in Friday's outcome.  Obviously this is not a mechanical problem, and is nerve related.   And I agree that going back ot Dr. K is a waste of money.  But I think I would write her a letter and let her know how disappointed you are in her (Dr. K) and the GI doc and that your severe weight loss was ignored.  It is deplorable.

And...I will remind you when you get home.  Please call Patient Relations dept at CC and say you want to file a complaint.  Tell them that you should have been notified before going there that the nerve tests are not done at CC.

Also tell them that the doctors are negligent in not helping with your severely depleted nutritional status.

I did this after Mayo told Craig that he was developing a neurological disease but will have to get worse.  Patient Relations wiped away our 500 dollar balance.

I think your disappointment needs to go on record.

I am overwhelmed with sadness Sheila.  You know I am.  

And it is St. Joseph who helps to sell houses when you bury him upside down in your front yard.

Elaine

[Oldroser]

Try burying a statue of, oh dear, I can't remember if it is St. Joseph or not, in the yard. I have heard of it helping to sell houses in the past but oddly enough not read about it during this time of slow selling houses. It can't hurt and might help!

[Quixotic1]

Hon, you know how hard I'm thinking about you.  Are you capable of drinking three cans of Ensure (or the Instant Breakfast) a day?  Did she even ask what you had been trying?

I, too, am appalled, truly appalled that they didn't take you in and work on your nutrition!  Obviously all of your efforts to refeed yourself have failed.  Why did they think that 3 ensure would be an answer?

Is there anyway you can go down to where your son is early and get involved with the doctors without waiting for the house to sell?  I pray for the right buyer as soon as possible, but I don't see how you can wait for this.

Quix