Post #1--had some stressful, discouraging, sad stuff

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emmi
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   Posted 6/17/2007 10:11 PM (GMT -7)   
Hi everyone,
 
I don't usually like to dump here, but boy, this has been one heck of a weekend. First, I have to set the "mood". There has been more than the usual amount of family tension--by family I mean extended: father, estranged brother, sister....long story. I have allowed it to get me in knots and I have learned not to do this to myself but somehow I got off track.
 
So, into this mess comes the mail with my second denial from social security. so I guess the next appeal is the adjudicator. Still, it was depressing. At least this time they conceeded I could not do my former job, but I could still do some light work--what is that?? Can I work for 30 to 45 minutes at a time, have a rest for about the same length of time, frequent water breaks, bathroom breaks (having GI problems now), a 2-2.5 hour nap etc. Anyway....
 
Next, my sister and I have been telling my dad that my mom has been showing signs of Alzheimers for about a year now. She is also a 7 year lung and bladder cancer survivor with severe COPD on o2 24/7 and extremely weak. He has not been willing/able to hear it. 2 months ago he told me I was wrong. Well, last night at 1:00a.m. he had to phone my 2 sisters to come help him deal with my mom who was mean and hateful with him. She was disoriented and incontinent, etc. It took 3 hours to get her cleaned up and in bed. My sister said she just wasn't there although she knew everyone. My dad is planning on calling her PCP tomorrow. He works 3 full days a week. She cannot be alone, obviously. I don't know what the plan will be.
 
And next weekend is when our daughter and sweet grandaughter are moving in. I think we're being realistic about it in that it's not going to be a picnic and yet it will have an upside as well. It's agreed all around that no questions asked, I go to our room whenever for whatever reason. Thank goodness.
 
Weel,, I think that's it. Thanks for being here. And now I have a question for post #2....
 
xoxo emmie
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SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 6/17/2007 10:57 PM (GMT -7)   
Oh Emmi, you really have had an awful weekend. Not having any experience with SSI, I can't comment much about that except to mention that I've heard over and over that it usually takes three times to get an acceptance. So on that front there may be hope ahead.

Im so very sorry about your mom. I went through a similar situation with my dad so I know firsthand how ingrained the denial system can be. That may be what your father is experiencing. He must be feeling so overwhelmed. When my dad was diagnosed, he and my brother and I had some rough personal times and I'm still convinced that neither my brother nor my dad ever accepted Dad's diagnosis. But if it was hard on me, I can't begin to imagine what it must have been like for my mother. Is there an alzheimer's support group you can go to? I've been sitting here all evening feeling sorry for myself because of my lupus, and then your post comes as a reminder that things could be a lot worse.

How old are your granddaughters? I hope they aren't too young and that they and your daughter will be more of a help to you than a burden. What do we all hear all the time Emmi? That stress can be so detrimental to our health. My granddaughters are 6 and 8 and while I adore them, I know I'm not up to having them round the clock as long as my health doesn't improve.

Keep a good stash of tea around so that you can take a cup of hot tea into your bedroom whenever you need to rest or decompress. And I want you to know that you'll be in my thoughts while you're settling into a new routine. I wish you the best on all fronts. Don't try to take on more than your health will permit, Emmi. And the best thing you can do for yourself is to come here and vent all you want. You are going to need an outlet now more than ever.

((((((((Hugs))))))))

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 6/18/2007 2:28 AM (GMT -7)   

Hi Emmie, I love the way you posted this. Stressful discouraging sad stuff! I have to agree with you there. I know you can be a charector but some times life really throws us a curve ball and it's hard to always stay on top of the pitches. (my baseball analogy) lol. I'm sorry to hear about what has happened to your mom. We are dealing with the same thing with my father right now. My mom calls me up crying and she's a very strong woman, She is just so frustrated. Half the time she says he's just pretending to be sick so she will give him attention. (boy what does that remind ya of?) When I go to visit them though I can tell it's not a game. He decided to bake a cake while my mom was gone and didn't put any water or milk in it. Just eggs and oil. He said he used the mixer. well the beaters were no where around and I can guarentee ya he didn't wash them. so it turned out to be some kind of flat thing stuck to the bottom of a pan. My mom is afraid to leave him alone because he forgets to turn off the stove all the time. He has to be very hard to watch someone you've spent the past 60 years with discinagrate in front of your eyes. Don't be too hard on your dad I'm sure he is beside himself. Besides we all know the woman is usually the strong one that takes care of stuff. I don't know what my dad would have done if she had gotten sick first.

Ok so on to social security. Don't miss around. Sounds like it's lawyer time. I know what you mean about working. It makes no sence what they are saying. I get SSD but I really want to work. Some days I know Icould but there is no way that I could really commit to working. I would never be able to know until I wake up in the morning if I'm gonna feel good enough to go. I sincerely doubt I'll get a job where they let mew call off at a min. notice. and another thing about SS I dohn't get. Remeber we were talking about getting med. through them? well some genius there decides that yes I do get a check because I am disabled. However I have to be disabled for 24 months (on disability) before they will cover my medical expenses. How stupid is that? Just keep fighting them hun. You have a right to that money. ERRRRRRRRRRRGGGGGGGGG!!

All I can say about your daughter and granddaughter is. Get a refigerator put in your bedroom! have your t.v. phone, computer, bathroom of course. LOL. My son and his girlfriend were living with me for 3 months. I have bedrooms at both ends of the house. both have attached bathrooms. We never saw each other. It was wonderful! LOL.

Well ok I think I covered everything. If I spelled it all wrong or it sounds strange it's 4:30 in the morning and I have no idea what I'm doing out of bed!

 

Hang in there love ya lady

carol

 


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Oteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 6/18/2007 3:45 AM (GMT -7)   
Emmie it certainly sounds like you are going through a rough time right now. I hope that things settle down for you very soon. I am sorry to hear about your mom, I can't imagine what that must be like and pray that I don't have to find out. Take care of yourself as best as you can, don't let things get you down or you will end up getting sick. Good luck with daughter and granddaughter moving in. Hope that goes well for all of you.
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/18/2007 7:27 AM (GMT -7)   
emmi, first of all let me say that you always offer som much great support to others here that it's about time you vented and let us be here for you.

I'm really sorry about all of this stuff happening at once - any one of those things would be enough stress by itself. Dealing with everything you have on your plate would be enough to stress a healthy person out. The situation with your mom has to be so hard. We watched my grandma go through it and she was a very proud and stubborn woman who would not ever acknowledge that her health and her mind were deteriorating. I also saw how hard this was on my grandpa and my mom - my mom was the one who ended up caring for my grandma most of the time and it really can take its toll on people. I don't know if there is anything like this near your mom, but in our community we have an Adult Day program at our local health center and several people with Alzheimers would go there when their caregivers had to work or if they needed a break. It was covered by insurance too. I'm not sure who you would call to find out if there is one in your area, but an Alzheimer's group might be able to tell you. The day programs really are helpful.

I'm really hoping things go well with your daughter and granddaughter moving it. I'm glad you have your own space set up that you can go to anytime. I like Carol's idea of having your own little sanctuary in your bedroom complete with a fridge.

I hope you'll keep us updated on how things are going and how you are doing.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 6/18/2007 7:42 AM (GMT -7)   
Emmi, I'm sooo sorry you are having to deal with this!

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/18/2007 8:50 PM (GMT -7)   
Pat, Okie, Connie, Hippi and bhkhhh,

Thanks so much for being out there. I'm sorry Pat, Okie and Hippi that you personally "know" Alzheimer's. My dad did speak with the dr. this evening. He's to call and make an appointment tomorrow. My dad asked if the dr. wanted just he and my mom to come or all of us kids to come as well. The dr. left it up to us.

I definitely plan to appeal the SSDI decision. I do have an attorney already. I plan on calling all of my doctors and asking them to write letters on my behalf as soon as I have the energy. Maybe one call a day huh? Or do you think I could get them to do a telephone tree type thing like the PTA does?

As far as my daughter and grandaughter...I think it will go as well as can be expected. This daughter is the one that can make me laugh (she is also the one that has given me the most gray hairs!) and we're really on the same wave length (that explains the gray hairs ;-) She's a big help to me as well. My little g.daughter is going on 15 months and is my little sweet pea. She's a grandpa's girl so that'll be helpful too.

And boy by the time I get done stocking my room, they may never get me out. Well, I take that back. My sister and I do love our Target field trips! Even when all we buy is toilet paper, immodium (for guesswho) and sun block when it's on sale.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/19/2007 1:50 PM (GMT -7)   
Hey emmi--
Sorry to hear about all that. On the SS side, I was really sick and they did that to me. They always do that, leaving the door open for you to go to voc rehab if you want. Anyway, they have to find a certain percentage of jobs in your area that you can do with all your limitations and they never do. So then you get it. They're just dragging it out. And the more limitations you have, the harder it is. They came up with some ridiculous profile of a job I could do and when they asked the occupational guy at the trial how many jobs there were, he said zero. So it goes.

I agree on stocking your room up. That way, you have your own little oasis. I'm so so sorry about your mom, I know that must be so hard to deal with, let alone trying to help your dad to come to terms with it. Then, trying to get the docs and your mom to get together on things. I hope and pray that things go good for you!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 6/19/2007 10:53 PM (GMT -7)   
Marji,

Thanks so much! I think of you so often. I know how intelligent you are and how frustrating it must be for you to be unable to use your talents in the working world. I was in education--early childhood and loved it. I also put together programs for parents of "kids at risk". They were wonderful to work with. We tracked their children and have the statistics to prove that Early Childhood programs and my parent program (I got to design and implement it--learning and changing all thru the years!) made a difference. Oh how I miss those kids and hteir families.

You are so right, they make you jump through hoops and then......well I hope. I mean at this point I can't even count on the right words coming out of my mouth when I want them to. And ya don't need that in the class room! Thanks again, Marjji. I hope things are going a bit easier for you and your son.

xoxo emmie
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SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/19/2007 11:27 PM (GMT -7)   
Thanks emmi, I don't feel so bright sometimes. I really lost alot memory wise due to atrophy and still have some bad recall problems. I know what you mean about the right words. I tried to interview for a job once and the bossman asked me to talk about my favorite project and I froze and I couldn't remember the technical terms or who I did it for and then I started wondering if I did it for employer x or employer y and had no idea what year I did it in and I got so nervous the guy got impatient and even though I was very well qualified for the job, a perfect fit with 13 years experience and good references, I didn't get the job due to my swiss cheese brain. That was why I left work in the first place. That and severe pain and fatigue. I'm glad I didn't get the job. I probably would have stressed out so much and it might have ended in humiliation and I don't need more of that. I know you must miss such a meaningful and cool job. i cried during my hearing as they listed off my "faults" and why I couldn't work and all. The judge could tell I really felt bad about not being able to work anymore. I didn't think I'd be upset at all. I really admire how up your spirits are. You are such a trooper and always there with a kind word and love and support. Thanks emmi for being you.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/20/2007 8:43 PM (GMT -7)   
I'm sorry you've had to go through this too, Marji. I really think losing so much of my brain power is what bothers me the most. When I see old work stuff I marvel that I actually put that stuff together...and then like you said, the tears start. Boy, we are softies about our work! I guess we were lucky to really love what we did. Thanks for your kind words; they mean a lot. Truly, they do. Let's feel good for tomorrow whether we do or not!

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 533
   Posted 6/21/2007 10:32 PM (GMT -7)   

HI Emmie,

I just wanted to post on your daughter and granddaughter coming to live with you.  My daughter in law and 3 grandsons moved in with us last June.  (My son was in Iraq).  It was really a blessing in disguise.  Yes, I got worn out by having them here but I really think I did better because I didn't want my grandsons to think I was always sick.  So... I think I pushed myself a little harder than I normally would have and tried to not be sick that much.  If I had a bad day or night I would just go into my room and stay away from everyone.  I was battling some depression when they moved in and now it is totally gone.  They actually just moved out 3 weeks ago.  And though I enjoyed having them here I did the happy dance when they left.  Now, it is just my husband and I and our new little Min Pin puppy, named Princess.

Try to enjoy your granddaughter while she is there with you.  They grow up too fast.

Mary Ann


 
**Diagnosed MCTD(doctor now says it is Lupus),Fibromyalgia,Raynaud's June 2005
**Sleep Apnea - February 2006
**Congenital Heart condition-Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Limbrel, Folic Acid, Metoprolol, Lotrel, Alprazolam, Cymbalta, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/22/2007 8:21 PM (GMT -7)   
Mary Ann,

It's so funny that you posted what you did. I have really made peace with them coming "home" for a time while our daughter finishes her degree. It's waht they need and I'm glad we can be here for them. I've also had the thought that how many other grandparents have a front row seat to watch a little one grow through these years when they change so fast. I am also hoping that it helps sow the seeds for a close relationship that will carry over as she grows up.

I know I will have my days; we just do. And those are the days Grammie will sleep in or take an extra long nap or do what ever I need to do. I'm also just as sure there will be days that I'll drive my daughter crazy and they will be leaving the house for "outings"!!!

It will work out and on my crazy days I'll come here and scream :-) Thanks for your words of wisdom. And Thank Goodness your son is home and the family is together. Thank him and you all for his service and your sacrifice.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

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