Having Such A Hard Time

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Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 6/13/2013 8:18 PM (GMT -6)   
Gosh I just can't seem to get any relief with my pain levels. I have taken it easy all week by doing nothing extra. I did go to my rehab sessions, but even those were very difficult and not just due to my pain levels. As I was walking on the treadmill my Oxygen levels dropped to 83%, it took almost 5 minutes before I moved back up to 90%.

I just feel so bad, I think I feel like death warmed over. Even though I'm not 100% sure what death warmed over feels like. I called my primary care Dr and she wants to see me Tuesday afternoon. Of course, I'm having my cataract surgery on Monday sometime. Guess hubby is just gonna have to accept we will be at the hospital most of the day Tuesday.

I honestly don't know if I can continue to hold on. I have been fighting my RA/Lupus/Fibro for so many years now. The Leukemia is just making my situation so much more difficult. I'm missing my parents so much right now and with my daughter so mad at me. Well.......I just feel like there has to be a better place than here right now.

My therapist and talked a lot about my passing away and how I thought my family would handle it. I think they would adjust okay. I mean don't get me wrong I know my family loves me and would miss me, BUT I also know what it's like to take care of a loved one who is chronically ill. I didn't want to see my Mom pass away, but watching her suffer like she did was so hard. When she took her final breath it was bittersweet, part of me wanted to die with her. I thought how will I ever manage without her, then in the next breathe it was relief I felt, that she didn't have to suffer anymore. I truly believe my family would feel the same way about me.

My daughter is really having a hard time that my Dr's can't keep me comfortable. She resents them, thinks they treat me like a lab rat, and then is mad at me for allowing them to treat me that way. I just don't know what to do. I want what time I have left with her to be good memories and happy times. As it is now, she's unpleasant to me to say the least. Even hubby tells her not to speak to me in that tone or way. It goes in one ear and out the other. She's been traumatized all the way around and I feel responsible. Please say a prayer that things improve for her and I. She's 20 and I don't want her hating me and then I die, she'll feel badly about that.

Thanks for listening, I just need to unload at times. I'm hurting to much to sit here anymore. So I'm off to bed and to take some pain medication. I hope you all have a good night that is low in pain levels and a good nights sleep awaits you.


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

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 6/13/2013 11:30 PM (GMT -6)   
I've been thinking of you, Barb, but was traveling (A's business trip) and too difficult to post or call. Back home today and having an awful time with some items messed up on A's business website. I'll call you as soon as I get out from under.

Hang in there as best you can, ok?
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Nov 2010
Total Posts : 2
   Posted 6/13/2013 11:54 PM (GMT -6)   
Praying u feel better luv
What God has for me it is for me!

May God bless you and keep you.
Dx: SLE /2002, sulfa allergy. Taking placq,Imuran,prednisone ,rituxan infusion and IVIG when needed.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 6/13/2013 11:56 PM (GMT -6)   
((((((((((((((((gentle hugs))))))))))))))

Put one foot in front of the other like the song says.

It will all work out in the end.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

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

Veteran Member

Date Joined Jan 2013
Total Posts : 1038
   Posted 6/14/2013 4:12 AM (GMT -6)   
I am sorry you are going through this. As I have told you I am on both sides of this at once. I am very sick but I also care for my mom and she has been having a very tough time lately. I cannot imagine my mom being a sick as she is now when I was going through my angry phase. As it is I am both angry she is sick and angry at myself for not taking better care of her.

My mom has dementia which I blame on her having electroshock therapy. So I am angry with the dr who convinced her to do that and with myself for not stopping her. When things with my mom usually come to a head it is because I am feeling inadequate in some way. I am not caring for her properly or guilt for putting myself first. Sometimes that even cause me to withdraw from her. Sometimes I do not know what the right thing to say to her is so I stay away or get defensive. But really I just want to make the rest of my moms life the best it can be and to get as much time with her as I can.

No one in my house gets me either. I just got dx so I am very scared and confused. So I will say something to my husband such as if things are this bad right now what will they be like when I am 60? Most of the time he just doesn't respond. Sometimes I just really need to hear that just because it is this bad now doesn't mean it will always be this bad. Also I need him to assure me sometimes that he is not going to leave me over me being sick. He does not deal well with sick people and he did not deal well when I had just UC so I am terrified now. He will get annoyed and say that I should know he isn't going anywhere.

Anyway if you want to you can email me.
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 6/14/2013 1:04 PM (GMT -6)   
Goodness Barbara. I feel so badly for you. My daughter was giving me a hard time about all the drugs & lab rat thing for a while. Then, during the past few months when my SOB started, she worried and I said don't worry Baby, I'm going to take every test and all the meds until my docs figure this out. Yeah, it was a bit of psychology I threw in there, but after years of therapy I've learned a little and I'm entitled wink I don't know how long it will keep her calm, but it's been working a while now. Unfortunately it sounds like Nikita has seen far too much of what you've been through, plus she was exposed to it at a much younger age than Tory.
On the other hand, Tory's father is also disabled, paralyzed from the waist down. He's in the hospital currently, but for the past year he has lived with her. She is now in therapy and it's helping so much! As always I'll keep you in my prayers. I completely understand your end of life position. I love you Sweetie. Donna

Regular Member

Date Joined Jan 2013
Total Posts : 47
   Posted 6/17/2013 2:38 PM (GMT -6)   
I'm so sorry this is happening to you. Its hard enough to deal with chronic illnesses let alone family problems. Not trying to stand up for your daughter's behavior but as a young woman who dealt with a lot of heart ache at a young age, we tend to lash out in anger. Its just a way of dealing with it. I'm sure she loves you very much, this is just a lot of emotion for her to deal with. She probably feels like she's losing her mother and that's a lot for her to process at 20.
On that note, I'll be praying for decreased pain and a calm heart for you. And understanding and peace for your daughter. I hope it all starts to get better soon! I'll be thinking of you!! Hugs, Nicole
Nicole- 25, married, no children, Registered Nurse
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Nucynta prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~
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