Family becoming fed up

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Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 8/29/2014 6:20 PM (GMT -6)   
I am new to this site. So many of your posts have helped me very much.
Recently I have been taken off my meds causing a major flare.
I have lupus and psoriatic arthritis. They suspended my meds because it was discovered I had avascular necrosis in both hip joints. This condition is secondary to long term steroids.

I guess this one more set back in a long line of them was more than the family could take. My husband of 25 years keeps making comment about all the places he wishes we could go. I was diagnosed at a teenager, this is nothing new to him. Lately getting out of bed is a major undertaking. The family went from spending time visiting me in my room, making sure I had food and drinks to barely checking on me.

I find myself feeling very much like a huge burden.

Anyone else go through this? How did you get through?
There are many days when I can't hold a brush or open a medication bottle. I'm frustrated and working hard to keep my spirits up.
Thank you

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 8/29/2014 10:08 PM (GMT -6)   
Cassie, I'm sad to say, but yours is not an uncommon story. There are so many people who don't want to deal with the problems of others, and we lupies often end up feeling very isolated.

Reaching out on this forum is a healthy step towards connecting with people who know just what you're going through. We're here for you.

During the first few years that I was incapacitated by lupus, this forum was a lifeline for me. I hope it will be for you as well.

Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 8/29/2014 10:24 PM (GMT -6)   
PattLatty,
Thank you for your kind words! It feels incredible to know someone out there knows how I feel and made it through the rough times.
Cassie :)

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 8/29/2014 11:55 PM (GMT -6)   
Not just someone, Cassie, but lots of someones! I urge you to talk to your doctor about this because you need to fight depression, but you can't do it alone.
SLE, fibro, renauds, restless leg?

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 8/30/2014 5:51 AM (GMT -6)   
Hi Cassie and welcome :)

I'm so sorry to hear what you are going through with your family, sending gentle hugs your way.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 8/30/2014 2:55 PM (GMT -6)   
Hi All,
I have weekly therapy with a therapist who is helping, slow goings.
This too shall pass !
Once the ortho surgeon clears me, hopefully, next week I will be back on all my meds and just waiting for them to kick in.
Thank you replying. Makes me feel like less than a drop in a bucket.
One day at a time, nothing I can't handle just one day at a time.
Cassie

Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 8/30/2014 3:02 PM (GMT -6)   
Just to add one more thing:
Chronic illness has taught me to live in the moment, appreciate the little things. Most of this goes right over my family's head. They are now learning through me how important "being present" can change the way they view the world. All the things chronic illness teaches us that I can pass on to my family.
Right?!
Cassie

diane in fv
New Member


Date Joined Aug 2014
Total Posts : 2
   Posted 8/30/2014 5:00 PM (GMT -6)   
Cassie1289 said...

I guess this one more set back in a long line of them was more than the family could take. My husband of 25 years keeps making comment about all the places he wishes we could go. I was diagnosed at a teenager, this is nothing new to him. Lately getting out of bed is a major undertaking. The family went from spending time visiting me in my room, making sure I had food and drinks to barely checking on me.

I find myself feeling very much like a huge burden.

Anyone else go through this? How did you get through?
There are many days when I can't hold a brush or open a medication bottle. I'm frustrated and working hard to keep my spirits up.
Thank you


Hi Cassie, I just found this site and this is my first post....why? Because the EXACT same thing happened to me just now. I came on here crying because I had to cut short a day at the park. I didn't want to go because I wasn't feeling well and its way too hot outside for me to tolerate. I did it anyway. My husband's disappointment was so palpable it made me feel horrible. I've been ill for over 15 years yet my siblings and husband still constantly ask me to go places and do things they know I can't do. So that leaves me always having to say no or going any way and having to cut every one's time short because I just can't do it.
My adult son gets it and my Mom, who also had SLE, understood. I lost her to complications caused by the Lupus about two years ago. I have felt so alone since then.

Like you, I'm so very frustrated. If it wasn't for my brand new grandson, my son and daughter-in-law, I probably would stop taking all these medicines and let nature take its course, but they want me and need me even on my worst days - they are the only ones that "get it".

I could still be happy doing what little I can, I used to be, and I still try to be happy, but not when I'm made to feel like such a burden. I'm also angry. To me, they're not being forgetful and its not like they don't know about Lupus, I feel they're being selfish.

I'm so very, very sorry you're feeling like this on top of everything else you have to go through. Please know I DO understand and from reading through this forum, others do to. xo - Diane

____________________
(SLE, Psoriatic and Osteo arthritis ...and everything that comes with it)
As with many life-altering events, an autoimmune illness is almost guaranteed to cause you to re-evaluate your priorities.

Post Edited (diane in fv) : 8/30/2014 5:14:47 PM (GMT-6)


Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 8/30/2014 9:22 PM (GMT -6)   
Diane!
That's it! You get it!! Thank you :)
Hang on because, as my adult daughter puts it "I'd rather have you here, just the way you are, than to miss you terribly. Call me selfish and maybe I am but there is nothing better than a Mom talk. Even if you can't go and do stuff, who cares! You are here!"

That is exactly what my daughter said today. So, I like you will try to find the joy in every day. The joy is there. It may not be the "jump up and down" kind of joy but it's enough.

I raised my girls to "bloom where they are planted". In other words do the best you can with what you have, be the best you can be with what you've got. WOW! It's harder more often than not!

Hang on to each little smile and nod of understanding and ignore the rest. That's what I'm working on.

525,600 minutes of love every year. No day but today!!
This has become my mantra on days like these.

Thank you, thank you, thank you for sharing!!
You are a fighter!
Cassie

Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 8/30/2014 11:47 PM (GMT -6)   
If like to thank Pattylatty, Acquiesce, and Diane in fv.
You all helped me very much to find me. The part that knows I do all that I can when I can. To realize that is good.
Today my husband helped me bathe and he changed all the bed linens. Next thing I knew my two girls were cleaning the house!
I even watched a movie with all of them....from the comfort of my bed. A good day. I can still give out "mom hugs" as my girls call it.
That's a good day!
Thank you all for helping me find my inner strength!
Cassie

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/1/2014 6:21 PM (GMT -6)   
Cassie:

I understand where you're coming from too. I'm so glad you had a good day and enjoyed and they stepped up to the plate for you.

I feel all time like a huge burden to my family. Most time I end up taking myself to the ER if I need to go there. This past Christmas I went into the hospital on Dec 23rd, could barely breathe and drove myself down to the ER. My family said to give them a call and an update on what they said. They both knew what kind of condition I was in.

I was there at the hospital from the 23 of Dec until the 11 of Jan. I spent 10 days in the ICU and they never once visited me while I was in the ICU. I held on tightly because I had a cat love very much, he recently died and now I'm all alone at home during the day.

My kid is off living her life at college and hubby works all day. When he comes home he turns on the what he likes to watch and ignores me. I had surgery in June and I'd ask for something to eat and it might be 3 hours later before I got it. I really get how you feel like a burden.

I hate to ask anyone for help, cause I get a sigh or an attitude. When speaking to my hubby he doesn't even pretend to listen to me anymore. We've been married almost 30 years and I've been sick 26 of them. I've put my family through a lot. My daughter found me unresponsive and I ended up on life support and missed her high school graduation in 2011, I've never been forgiven for that one. Been told I know you'll somehow miss my college graduation too. Stuff like this hurts so so much. I'm begging for another cat and they don't want me to have one. I feel so alone in this world right now.

All I can say is keep fighting for you, you're worth it. If seeing your family even is they are fed up, but your ability to see them makes you feel good then so be it. It's not our fault that we're sick, we certainly didn't stick our hands up and ask to feel like we do. Not at all, and IF they could live in our body just one day they might change the way they look at things. So, keep fighting, see your therapist, and come and vent here.

Sounds like a change may be headed your way with your family, and that's a great thing. Let us know how things continue to go for you. I hope that you restart your medications and start to get out of your flare really soon.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1343
   Posted 9/1/2014 10:00 PM (GMT -6)   
Cassie

Sorry to read about your lack of support.. I am in somewhat similar position myself: though I am long time single, I DO have grown children.

I've recently begun to have an internal debate - would I be better to live elsewhere, far away & be ignored
rather than being close by & be ignored? Not yet sure

I am blessed to have a friend who expects an email from me daily &, if she does not get it & also cannot get me on the phone, will contact authorities.. how wonderful, yet pitiful is that?

When she recently suggested I was depressed I replied I am sad - but, like the infamous 'which came first? Chicken or the egg?' Does our sadness cause depression or vice versa ? How could we NOT be sad?

Am Reminded of one of those short stories in Reader'sDigest- remember those 'feel good ' pieces at the end of a regular article? This one was about an elderly lady, being moved to a different nursing home: one of the nurses / aides was describing how beautiful the new room & facility was, to prepare her. The elderly woman's comment was designed to remind the reader that happiness is a state of mind, not a physical place.

Re: family - When days go by without a phone call, much less a visit from them
(which is not even out of their way every single day)
or, help w/a meal when in a particularly rough episode- now & then, etc. I think of the above story & know just to expect NOTHING, now or in the future.

That MY ability to be happy depends SOLELY on me.

My bitterness, like hate, will only effect me - obviously noone cares how I feel, much less what I need !!

That said, I do not, for one minute believe I would act the same way if our roles were reversed.

And when I once again read about how others are directly mistreated, like Barbara Lee, my heart breaks just a bit more.

Interestly I've discovered that this behavior is considered marital abuse.. even grounds for divorce in some states.
think about it.. ignoring the needs of an obviously disabled person, child or adult, in need is illegal as well as morally inexcusable.

It will continue as long as the victim allows it -& the victim can pay a high price for reporting it.

we cannot change others, only the situation, if we so choose.

As stated earlier in this thread, we did not ask to be sick. Yet we are punished for being sick..
like is often the case with abuse, if 'outsiders' knew they would be appalled.
& we are too ashamed to tell. Who would believe? Or understand ?

Thank goodness for this forum & the caring people on it !

Wish I knew the answer.

Gentle hugs & caring thoughts to you'll
Herniated cervical discs & other disc / spine issues, Arthritis, spurs
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 9/2/2014 4:54 AM (GMT -6)   
Barbara Lee and Diane B,
Thank you for sharing with me your life stories.
I think it does help to know I am not alone, it actually strengthens me. I am resolved to turn things around to the best of my abilities. Not quite sure how yet. You are correct, we can't change others only our perception. Get a new cat! If that brings you joy!
You ladies are strong fighters. I'm not throwing the towel in.
I'm just getting started!!
Thank you ladies for sharing!
I hope you find your positive in everyday, no matter how small.
Cassie turn turn turn

Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 9/2/2014 5:21 AM (GMT -6)   
I forgot to mention I have two doctors appts today. I am praying I will get the ok to resume my meds again!! I have been off all meds for two months because my rheumy thought they may cause the avascular necrosis of my hips to worsen. Hopefully today I will get good news from the orthopedic surgeon!!
My next rheumy appt is on my 46th birthday, next week, he better have good news or save it for another day! Lol
Best wishes to all of you going through this or a similar journey!
No Day But Today! You have all lifted me up sharing your stories.
I'm not alone! You are not really alone!
With great respect, thank you!
Cassie

Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 9/2/2014 3:11 PM (GMT -6)   
Hi All,
I wrote to you when I was feeling low and everyone really made me feel better and not so alone. Thank you.
Now I'd like to share some really good news. I just left my orthopedic surgeon's office. 3 months ago while in the hospital it was discovered that I had AVN (avascular necrosis) in both my hip joints. Because of this my rheumy stopped my cyclosporine until it was verified it would not make the AVN worse.
Today I finally got word that I can go back on my med!!
I am jumping for joy inside!
Just wanted to share.thank you
Cassie

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/2/2014 7:30 PM (GMT -6)   
Great news, Cassie! I'm happy dancing for you. :-)
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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