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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/8/2010 7:44 PM (GMT -7)   
Hi everyone, I just wanted to come by and see what everyone was up to. Unfortunately I think I'm having a flare but I'm not sure. You would think after all this time I would know.
2 weeks ago my doctor looked at my face and I had several new red dots on it. I can barely eat, I'm always nauseated but not vomiting. I have diareah that runs through me at least 5 times a day. Min. which is odd since I don't eat. it's gross but it's almost spinage green???? There is nothing that does hurt and my eyes have be blurry and I seem to get dizzy quiet often. She has me on high blood pressure meds and my blood pressure is 98/60.
My doc did a blood test to see if it's another A/I disease and then she went out of town again! I called the office not knowing she was gone because I felt so bad. The nurse said she will be back monday and if there is anything urgent with the test she will call me mondayconfused . By monday I could be dead. She's been doing this alot with not being around or leaving someone in charge. Which makes since becuz no one will want to take her patients on 2 weeks out of the month.
Once a month at least I try to make the meal for the Sr. at the adult center and this morning one of the ladies from my church came over and helped me because I was to sick to do it myself. She's really sweet and I know she would never want to hurt my feelings but she said I should probably not do the meals for awhile until the dr. can balance me out.
2 hours  twice a month and I can't do it.cry This is not what I would call living. So now all I can do is bake a cake or some kind of dessert.
I know I'm rabbeling but I need to go I'm hurting from setting here for 10 mins. I need to start learning how to type faster.
love to ya all
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 4/8/2010 7:58 PM (GMT -7)   
Gosh, I'm worried about you, this doctor doesn't sound very good for you.

I wonder if part of the reason you are so nauseated is because your stomach is so empty? Aren't people supposed to be coming by to help you (I thought you said?) -- will they help you with food? Can you try to at least eat some crackers or something to absorb some stomach acid -- I think that would help with the nausea and then maybe you could eat something with some protein energy in it -- an Ensure drink or some Gatorade or something?

Sorry I can't really do anything except let you know I'm sending good wishes, hope it gets better soon.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/8/2010 8:11 PM (GMT -7)   
Oh Carol! I agree with Lynnwood, this doctor doesnt sound like the right doctor for you. Can you any way possible see another doc? Or even see one of the docs that are in your doctors practice? You need to have someone who is there an willing to help you when you need it, not when it is convientant for them.

Please try and keep something in your stomach, even if its something like cheese and crackers or differnt types of soups. Since you arent eating much, how is your blood sugar doing? Is it dropping to low? That could be why you are dizzy all the time. Also when my blood sugar was dropping a few months ago, I would get extremly nauseas and dizzy. I know its hard but when you start getting dizzy/nauseas try to eat a scoop of peanut butter or drink some juice.

I am worried about you and wish I could do something to help! Please know I am praying hard for you and please keep us updated on how you are feeling and what you hear on Monday!

Love you Carol

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 4/8/2010 9:19 PM (GMT -7)   
Carol, I have to agree with Lynnwood and Amy....this sounds bad! Please try to eat something, even if it's just chicken broth and crackers.

You are in my thoughts and prayers.....I'm praying that you will be able to find a better, more reliable doctor too!

((((((((hugs)))))))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/9/2010 7:13 AM (GMT -7)   
Hi thank you, Lynnwood, Ames, Joann, thanks for the response. I know I'm going to have to get another doctor. I just dread it. When I first got sick she was the one that DX"d me to the point of sending me to a rheumy. I have so much trust in her. Unfortunately when she moved she started working for a corporation instead of herself. I ever mentioned it to her nurse yesterday that she seems to be gone a lot. and the nurse told me Yeah it's been a life change for her now that she changed where she works she gets to see her family more.
When she first moved I started going to another doctor that was very sweet but was a G.P. and she was an internist. I finally went back to her after the hospital,nursing home bout. Even though she is still on the ball she's not there when I need her. nor anyone who has access to my records. If I was just going in for flu's or cold or fevers or somthing it would be different. But life or death issues can't wait for 2 weeks.
 
AnywayYes I do have someone that comes in 3 days a week. But I still can't get anything down. I made a recipe the other day that looked good and took may 2 bites and threw it away. Plus I have a nurse the doctor ordered until at least june. She tried to contact the doctor when she was here They blew her off and didn't tell her it was because my doctor wasn't there.
Last paragraph lol. I do have a couple of ensures that I will work on today. I still drink stuff so I think I can keep that down. Well I might now be on the board for awhile until I can ge t to feeling better. but I wanted to thank you for helping me make a decission about my doc.
love ya
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/9/2010 8:17 AM (GMT -7)   
((((( Carol ))))) I am so sorry you are feeling so bad. The others have given you great advice, I have nothing to add I just wanted you to know you continue to be in my thoughts and prayers. I wish there was more I could do for you. Hang in there my friend, praying you will feel a little better after drinking the ensure.

Thinking about it, I would like to share some things that work for me when I feel like you are right now:

jello
ginger Ale
pop cicles
Sherbet
toast (gluten free of course)

Love ya smilewinkgrin
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/9/2010 1:12 PM (GMT -7)   
I am wondering if you shouldn't be at the ER this sounds serious. I know we all hate the hospital but seriously consider going in.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 4/9/2010 4:22 PM (GMT -7)   

Carol - I share everyone's concern and am sending my prayers along too.  I do think it's hard to start eating again after going a long while without - sometimes our bodies can't be trusted to understand what they need.  I know that sounds weird -but I remember going on a "liquid fast" in my very much younger days.....and recall that the first time I tried to eat something solid after 4-5 days, it seemed like my body had forgotten how to swallow.  Please try to keep nourishing yourself....and if that gets too hard - I'm with Redrose.....may be time for the ER.

Blessings to you -

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/9/2010 7:45 PM (GMT -7)   

Thank you Stacie, Redrose and lucy. for the support and the suggestions. Actually yesterday and today I quit taking all the the vitamins the doctor had me on(she would not be happy) since my blood transfusion. Since she isn't around to ask. I know I have to get back on the pottasium fairly quickly and I don't know about the b12. Frankly I'm stumped on that. I mean if I am taking shots do I still have to take the vitamins? and doesn't that have somthing to do with Iron so why do I need iron tablets?

Since I havn't taken this in 2 days my stomach seems to feel a bit better. I got down a couple of bites of chicken salad and some honeydew melon today. Yesterday I drank an ensure. Today was the first time I havn't had to be running to the bathroom. Which makes me think my vitamins are doing it. Unfortunately I can't stay off of them. Plus the doctor says mega protein. Maybe there is a drink that I can have that has ALL of the nessesary vitamins. I just don't understand taking them at all if my stomach can't absorb it.

Well anyway these are questions I've been asking myself. Any info would be great!

thanks On and on top of it to have to lose 40 lbs to get on the transplant list. So she put me on a 800mil. diet. so there are so many things I can't eat even if I felt like it.

thanks again ladies

love carol

Redrose I wasn't to crazy about the biopsy they did on you. Like I told ya they had taken all my parts out and then did a biopsy. I hope they do that with you. That was how they found my cancer and I had to go back in every 6 months for 5 years for tests.


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 


rivertree
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/9/2010 11:36 PM (GMT -7)   
my doc is the same way, i dont know how to we are suppose to manage a lifelong illness with seeing a specialist 20 minutes every month or 2 or 3....rediculous. since i am new here, and with this diagnosis i want to break the ice and let okie know that i have had that same greenie diarrhea and i know it is so not pleasant.

i know i have to start on a journey that yall have already been traveling on.. okie, we both gotta find a doc that will listen to us and spend more time on the patient in the office than somewhere else.. i am bouncing around like a scared chiuaua inside, but i want to find out who is the total guru on lupus and fly there and look them straight in the eye and spend my time with them..

and i will.
any ideas?

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 4/10/2010 6:42 AM (GMT -7)   
(((Carol))) A real bummer!! Your doc cut her hours and now you can't get in to see her shakehead  It really sounds like you should find another internist (not a GP).  If I were you I'd tell your internist that with all your issues you want to see a good internist who is there more often. Ask her if there's anyone she can recommend.
As for the diarrhea, Lupus decided my colon was a great spot to build a permanent home so I take the OTC drug Immodium almost daily and lots of it. My gastroenterologist is fine with this.
I take Rx promethazine for my nausea (not compazine). When I don't want to eat, I still enjoy popsicles, bananas, crackers, ginger ale, some canned soup, and chocolate soy milk.
Take it easy and try not to fret about the diarrhea. I know it's a pain in the butt :) but as long as you can drink and stay hydrated, no worries. If you don't know the reason for the diarrhea you should not cook food for others. Clostridium difficle and Giardia can live for months and can be passed on to others. I sure hope you can see your doc soon. I love you Sis. Donna
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/10/2010 10:30 AM (GMT -7)   

Hey rivertree and Donna, thank you for your reply. Rivertree might I suggest you start a new thread introducing yourself? when people join up and start on a thread that's already going they somtimes get lost. I'm sure everyone would like to get to know a little about you. You sound like you will be a great addition to the group.

Donna, thank you for reminding me that I could make someone else sick since I don't know what is going on. I hadn't thought of that. I am always so busy trying to stay away from others that are sick. I love fudge cycicles and cup of soup. Unfortunately the cup of soup had 11hundred grams of salt! I can't eat salt LOL. I didn't realize that until I had eaten it almost every day for 3 months. gee can't understand why my fingers looked like little ball park franks plumin when ya cook em. Well I will ask my doctor what is going on monday and I'm not telling her I'm searching for another doctor until I have one. I just want someone that people I know have actually been to and recommend. and of course know something about this dang disease.

well gotta go but thanks agians ladies and rivertree again welcome to the group!

love

carol


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/11/2010 8:44 AM (GMT -7)   
Carol,

I didn't realize that you were feeling this bad. I have a box full of organic products to send to you this week.

I agree with everyone else and think you seriously need to find another doctor. You're too sick to deal with an absentee doctor. I'm sure that there are some wonderful doctors in Enid, which would be better for you anyway. Then you'd be sent to Enid or OKC when you were hospitalized. If you were sent to the hospital in the City I'd be able to look in on you. I know a cardiologist in OKC who's from Enid. Do you want me to call him and ask for a couple of suggestions? I think your life would be much better if you had better care.

Take care Carol. You deserve the best.

Love you,

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/11/2010 6:30 PM (GMT -7)   
Thank you Pat! and thanks for the encouragement. It would still be nice to have someone hold my hand and give me strength when i don't have any. I feel like busting out into song ...............To dream..........the impossible dream..................tongue .
Thanks for the stuff from the healthfood store too. I've decided I'm going to go to walmart this week. I don't know how was new you but the weather here you could cut with a knife. I need to get a dehumidifier. I turned on my AC today and left the fan going then climbed under the covers. At least it made it a little dryer so I could breath.
Yes it would be nice to have you close by on one of my hospital trips. At least one that you didn't have to drive accrossed the state to see me. But you know God put a gold star next to your name every time you did that. wink .
It was good to chat with you on the phone thanks again for posting and checking on me.
Oh BTW I lost 4 lbs! I couldn't beleive it. I was stuck on zero. After you asked me I decided to weigh myself. I am down to 176. Only 100 more to go!!!!!!!!
love ya
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 


rivertree
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/11/2010 9:31 PM (GMT -7)   
well, thankyou okie, i would like to introduce myself a little better. this is my first time logging on to any forum of any kind, but it is the first time i have been diagnosed with lupus or fibromyalgia and i got really excited and thankful when i started reading that there were other people that i could relate to out there and i am really sorry if i didnt/dont do know all the ins and outs yet.. but here is some more about me.

I have been hurting in my spine and hips and shoulders for about a year and a half and didnt know why. i can now add total fatigue to that for the last 9 months. last sept 2009, i was hospitalized for what they thought was aseptic meningitis and had a lumbar puncture that didnt tell them a whole lot. I was treated with some pain meds and rest and after 3 days i was sent back home. i didnt feel any better though. a couple of months went by and it was all i could do to get through the work day, and i would fall into bed the second i got home each day.. so i went and asked the general doc to test my thyroid, that came back as underfunctioning and hashimotos was finally diagnosed by january 2010. i then went to my gyn doc and he said that he had a suspicion that i mite have something auto immune going on further .. so he did anticardiolipin, lupus antibody, and ana tests. he called me a week later and said that i needed to see a rhematologist asap. lucky for me, i got in around march and he did more blood work and said that i have lupus and fibromyalgia. i have been on prednisone,plaquanil,cymbalta and as of last week lyrica. my pain is not controlled at all yet, i am hoping to learn as much as i can about this mess to hopefully manage my life in a positive way and its just crazy., i want to know what to expect i guess.. i want to be able to tell my husband and family what to expect.. the rhematologist i see now doesnt seem real receptive to telling me much. anyway, i am new here and i dont know what else to say. thanks.
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