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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 2/8/2010 10:02 PM (GMT -6)   
I think we need to have a contest to see who comes closest to guessing how many times I've been in the hospital the last 12 months. confused .
Thank you all for your encouragment. thoughts and prayers. I'm gonna just set here and type and drink some hot tea and see if anyone gets to the bottom of this post. One thing I can say is when you get a blood transfusion and ya watch the stuff drip down from the bag into your veins it gives the whole vampire diary a who new vision. rolleyes yucko! I'm actually thinking I got it from someone annerix because nothing taste good anymore. Do you ever get a feeling like if you had to pick a disease to have it wouldn't be this one? I mean how many years have we known each other? some of us longer then others. I mean about the time I think I got this thing figured out I find out I know nothin! This past week I got put on 2liters a day of liquids. doesn't really matter what it is. Of course I whined about it because I'm always thirsty. So doc tells me it's because my salivary glands don't work properly IE I stay thirsty. So until further notice I can only have 2 lt. plus I have to take 80mil. lasix. I look like a dag gum sponge! My feet are all cut up from 2 weeks of extremely blown up feet and then 2 days of shriveling up. I gained in 27 lbs in 2 weeks and lost 20 lbs in 2 days. turn . They ran a ton a blood tests. I have to take individual vitamins and iron and vitamin b. for the next month. Then they want to do some blood slides and if I can't get my body to hold on to my intake then I will have to go to shots. I know some of you are on shots because you take methotrexate. Which causes in ability to absorb vitamins and iron. At least that's what dr. says. They are waiting for some tests to come back to see if I might have what our Barb has with the bone blood cancer. But I refuse to beleive it. Besides I'm too honary.  
I would like to say that all is well but frankly I am a little P.O.'d right now. I can only eat high protein and dark greens. I have to get more help from the state because I need help with cooking and dealing with paperwork and insurance. I am going in circlesturn . I have 4 insurance co. and I still put out 90 bucks today for some meds. I just got two insurance bills today. one for 70 thousand and 1 for 20 thousand. Gee do you think they will take it in pennies? LOL . I have to find some company to help me understand all this paperwork so I'm not putting out money I don't have to put out. It's overwhealming.
My other rant is I am really angry that my husband died! Not saying he would be the greatest help or support for me but it would be nice to feel like if I wanted someone to snuggle with and tell me they love me that they would be there sometimes. I'm greatful that even though I am getting worse it is  only slowly progressing. I am not sure what i feel more of. Fear or the thought that I won't be missed. Don't mind me I'm just kicking out thoughts. Somtimes I just try so hard to be possitive like I am sure you all do but ya end up in bed for the next 2 weeks. I get tired. I know you all get tired. Makes you think about never taking a day for granted. I often wonder what a book would be like if we all wrote a chapter large or small of our life. Somthing that would help someone else. My x daughter in law called me today because she hasn't gotten a check for child support from my son in a whole 3 weeks. tongue . I called my bro yesterday and he didn't call me back all day. I thought last night Wow he's gonna be devestated when I am gone. I wonder what was more important then a 30 sec. call back? I'm not saying I am gonna die tomorrow but heck we could all be gone tomorrow. It just makes ya think of things in a different light when you know things are changing. Well anyway Ijust thought I would throw out some thoughts that have been going through my brain or hat it left of it anyway.
I wanted to again thank you all for being there for me and barb and pat for keeping everyone up to date. I'm gonna try my best to stay out of the hospital for at least 6 months. I can't promise but I'll put my all into it.
God Bless ya all
I hope you are doing well, my prayers are with you.

systemic sclerosis,scleroderma,sleep apnea, anemia, COPD

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Post Edited (okie) : 2/8/2010 9:24:23 PM (GMT-7)

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 2/8/2010 10:09 PM (GMT -6)   
It's good to see you back! Bless your heart...you have been through the ringer. I'm sorry you are having to deal with all this on your own. I'm sure it is very hard to handle with no family members supporting you...((hugs)). My heart goes out to you Carol.

Please know that you are loved very much by all of your co-Lupies. You take care and rest and update us when you can. You are in my thoughts and prayers.

Love ya, Babs

Forum Moderator

Date Joined May 2005
Total Posts : 6938
   Posted 2/8/2010 10:13 PM (GMT -6)   
All that stuff (paperwork) sure does make a terrible mess for us, doesn't it? And the sicker we are, the more of a paperwork mess it all is, and of course the less energy we have for it all.

I know there are places that can help with all that paperwork -- as soon as I have time & remember where you are located at I'll try & find something for you.

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 2/8/2010 11:32 PM (GMT -6)   
Hi ya Bab's and Lynnwood, Bab's I have hardly gotten a chance to catch up with you. Looking forward to getting to see what you are up to.
Hey Lynnwood, Yes you sure nailed it! Being tired being sick and then all the papers come in at the same time. Plus the beginning of the year everything changes. I have medicare medicaid, chamva, then there is I also have the advantage medicare program. Plus I just got something about another medicare deal today that said because of my income I am entitled to extra help.
I live in grant county, oklahoma if that helps. My brain has quit functioning until further notice so I really need help to understand this stuff. my income is barely over 1000.00 a month and 90.00 really hurts. I am greatful though. I know I have it better then a lot of people. anyway thank you for the offer to help with any info you can.
Cheers back at ya!

systemic sclerosis,scleroderma,sleep apnea, anemia, COPD

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 2/9/2010 9:55 PM (GMT -6)   
Carol, I totally understand about the insurance stuff, they just denied a claim for me seeing my primary care doctor and I have no clue why. I have to call but my husband moved around all the paperwork on the desk and now I can't find it. I just want them to pay the darned claim because we have such a low income and the cost of living here is really high, half our income goes to rent and then we still have cable, phone, gas, and electric to pay. Worse, I am having more and more trouble with the memory thing again. I think I may have to have a medication change. I hate this. I really really hate this. I would totally not have picked lupus if I were given a choice of diseases. I don't know what I would have picked but it wouldn't be lupus. Some days I just want to cry. I am not depressed just sad that we all have to deal with this. I wish I could get the fluid my body is holding onto off. I can't handle too much lasix though because for some reason my tissues don't give up the fluid my blood does. I remeber when I was pregnant and my legs were so swollen it was miserable I can't imagine if I had gained like you did and then lost it. I really hope you feel better soon and that you get the help you need. I could use some help myself. I really need someone to come in and do a few things for me but my state keeps ignoring my applications for help. How did you get your state to listen to you?
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

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 2/9/2010 10:15 PM (GMT -6)   
(((( Carol ))))) I am so sorry you have so much to deal with, I couldn't imagine going at it alone, but remember you aren't really alone, you have us and the good Lord above. You are such a strong woman, please don't ever forget that! Don't let others being inconsiderate get you down, they just have no clue what you are living with and unfortunately have no compassion for other people. They are so wrapped up in their own lives (jobs, kids, sports, etc) they can't see past that to what others around them may need.

I like the idea of all of us writing a chapter in a book, it would really be interesting and helpful to others, that's for sure! You hang in there my friend and I will be saying extra prayers for you and hoping you don't have to go back to the hospital any time soon! Love ya
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)

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