update on home health care

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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 1/19/2008 7:48 PM (GMT -6)   
well I had the case manager and a nurse out yesterday to make a plan for me. I will have someone come out on mondays and thursdays to clean, cook, do laundry, help with my hair after showers I have trouble with my arms and my breathing to comb it out. she will do dishes sweep mop do bathrooms, run errands, clean my fridge pretty much whatever needs done. she will come 3 hours a day 2 times a week. than my nurse will be here 2 to 3 times a month. more if needed. she can come 36 times a year and have it paid for. They also have a van that will take me to doctors. They are putting in life alert incase I fall or can't breath or somthing. they are fixing my bathroom up with bars and stools and a hand held prayer so it makes it easier for me. The fire department is coming out to install fire alrms.
I had to go over a bunch of papers for living wills and stuff with my sister. she is my power of attorny. I know all this should sound like a blessing but I am somwhat overwhelmed. I keep telling myself "but I'm not that sick"! I've havn't even really tried to get this help it just all came to me after my last hospital visit. I've taken care of myself all this time. Than I read this part that this is my option to keep me in my home instead of a nursing home! When did I get so sick I needed a nursing home? I guess I'm sicker than I want to beleive. I'm finding this whole idea very uncomfortable.
One good thin is I stopped taking the second HP medicine 3 days ago. The nurse took my BP and it was 130 over 77. I wouldn't mind if it was a little lower but considering I'm not taking the other med I thought it was pretty good. Not to mention that when I quit taking it my migraines went away and my shaking went away. I have a doctors appt monday and will discuss it further but I am not taking that stuff again.
anyway that's it from oklahoma
love ya
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

Veteran Member

Date Joined Dec 2006
Total Posts : 708
   Posted 1/19/2008 9:38 PM (GMT -6)   

Hello from a bone chilling cold Missouri.  It's 6 degrees here this evening and going down below 0 tonight.  It's so cold every bone in my body hurts.  I thought the heat of summer made my symptoms worse but am also finding the bone chilling cold of winter is bad as well.  I think I will move to a place where the temperature is a constant 75 degrees.  Wishful thinking.

First, I want to say I am soooo happy to hear your migraines and shakes are gone.  It must have been the new BP drug.  I am glad you are off of that.  Your BP seems quite normal to me.  Not high enough where you would need a second med for it.  Your doctor and the visiting nurse will keep a close watch on it and if it goes up and stays up then you may need to consider a second med but there are many others that may not have the horrible side effects you had with this last one.   

I wouldn't look at the home care assistance as "but I'm not that sick" or "when did I get so sick I needed a nursing home".  You are no sicker now that you were before being in the hospital and getting the home care.  Now you will have extra help to do chores and have someone to take you to the doctor and you can now focus more on YOU and getting to feeling better.  You are still in your home, you just are lucky enough to be able to have help come in and do some of the everyday stuff that otherwise you would have to use up valuable "healing energy" to do.  You are still taking care of yourself but just with a little outside assistance.  There is a lot of change going on and it will take a little time to adjust.  Maybe you are like me and feel overwhelmed with any kind of little change.  You also seem to be a very "independent" person and don't like asking for help or feeling like a burden.  I am the most stubborn independent person I know and I hate having "help" from others but you know I'm learning to adjust to the help my family is giving me and I still feel independent.  I just look at the help I am getting as a "GIFT" and feel very fortunate to have the people in my life that are willing to help out and do some of the things that are hard for me to do.  I know it is hard but I hope you can look at the changes as a positive thing for you and an asset so you can focus on taking care of your health and getting well.

Thinking about you.  Let us know how your doctor's appointment on Monday goes.



Lupus 2008; Primary Biliary Cirrhosis 2007;IBS 2004; Chronic Hives 2002.
Medications:  Allegra, Zantac, Ultram PRN, Xanax, Darvocet, Ursodiol.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/19/2008 11:02 PM (GMT -6)   
Hey Carol,
WOW!  Now that is some kind of care!  That's what I needed this past summer, but no one was available!!  That is fantastic.  It's like having your own personal assistant!  How posh! LOL....On a more serious note, it's so important for you to have this.  I'm very glad for you. To know you aren't alone all the time is crucial. I"m sure your family is relieved too.
I had to do the power of attorney, living will etc too.  It freaked me out.  I was in denial about how sick I was too.  At least you got it done, and now you don't have to think about it and worry about it anymore.  Just put all that stuff away. Try not to think about it.  I know that's easier said than done. My brain reverts back to that more than I want it too.....  
Good that you're not on that other med.  Your bp is looking good Carol!!!  Which bp med are you on?  Mine isn't working.  I'm on Cozaar.  My bp started going up after my fever and allergy.  Weird how the body turns on itself after a trauma isn't it....
Let us know how your weekend goes okay. and how your doctor appointment on Monday went. 
Lots O love,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 1/20/2008 12:03 AM (GMT -6)   
Hi sweetie,

That was a great update. I've been wondering what kind of assistance they would come up with for you. Sounds like it's a sensible plan. Of course, it will take some adjusting--that should take about 2 visits as far as the housekeeping chores go :-) You're right that we do not like to think about the limitations that we find ourselves having. I think it's a natural response. Filling out the various forms does bring it home a bit, but remember those are things everyone needs to do regardless of their health.

All you need to do is relax and let the things that will help you fall into place. That should help you concentrate on yourself. You know I'll be keeping you in my prayers. Oh, one more thing...you keep that sense of humor and sassy attitude. It serves you well and we love it!

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 1/20/2008 1:43 AM (GMT -6)   
Hey Carol,

Way great!! I didn't take time to read the other responses . . . but you are sure to get better a lot faster with some help. So this is good medicine for you and a necessary thing. I can imagine that it would be overwhelming! Deep breath . . . now out . . . goood!!! Hang in there!! (hey . . .I didn't forget about you . . . I just had a really busy week!! Will be in touch).


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Aug 2004
Total Posts : 233
   Posted 1/20/2008 2:22 AM (GMT -6)   
Hi Carol
Glad to hear you have got extra help and use it to your full advantage becasue that will save your energy for your things you want to do, I have had home assistance in the past and it has been a blessing. I hope things go well for you

take care

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 1/20/2008 2:17 PM (GMT -6)   

Hi Carol,

   I'm glad your getting the help you need. Like the others said, now you can rest and focus on feeling better. Hopefully, this assistance will free you from alot of stress.

   Hang in there and take care. Please keep us updated. You are in my thoughts and prayers.

                                                 Love, Babs

Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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