Okay, I'm gonna vent a bit sorry. I'm in the middle of a huge flare up. I know last week with my friend here to help me, I should be feeling well. However, I'm not, I felt as if I needed to be up when she was up and spend time with her. I know she didn't expect me to be up all the time, but I just couldn't help it.
I guess I also feel as if I maybe disappointed her a lot. She had brought 16 movies with her for us to watch movies. She really wanted to get my hubby to watch them too, of course, he doesn't watch movies. I know she thought he'd do it for her but he refused, like he does with me. She and I only managed to watch 2 of the 16. My days are spent so busy with Dr appointments, pulmonary rehab, physical therapy, etc. that I just don't have time to sit and watch a lot of movies.
My daughter who is 21 and was home from college on spring break, basically lived in her bedroom the whole 6 days my friend was here. I'd try to stay awake late enough to get a stolen moment here and there with my daughter. That was very hard to do and I ended up only getting about
3 hours with my daughter before she had to return to college.
Now, I'm back to hearing from her only when she has time to contact me, which isn't very often.
My foot is killing me and my pulmonary rehab therapist lost her temper with me today. My Dr has instructed me to push ahead even if it hurts. The therapist doesn't agree with this nor understands the reasoning behind it. My physical therapist said he'd give her a call and try to explain to her that my pain is never going to go away. That by me stopping and just resting all the time will only do me a disservice. When he worked on my foot and back tonight he couldn't believe how swollen the foot was and how tight my back was. He also mentioned that I'm looking really pale again and asked if I needed blood again.
I'm tired beyond belief, my chest hurts and I'm certain I've got pericarditis again. Guess I need to give my cardiologist a call, my joints are swollen and red. My ulcers in my mouth and my tongue are so sore, ever since my MTX has reached the level it's at I can barely tolerate most foods. I ate a salad tonight with just plain ranch dressing and I felt as if my tongue was on fire. I don't know I'm thinking I'd rather start traditional chemotherapy to treat my LGL instead of the high doses of MTX at this time. Of course, my oncologist wouldn't agree with that at the moment.
I see my oncologist on the 29th of April, I'm going to again try to get him to understand just how badly I'm feeling these days. I really am ready to give up on life, telling me this is the best I'll ever be and I need to accept that is really hard. I can't begin to imagine what worse is going to feel like and how I'm going to cope with it. I just want to feel a bit better and less pain, really am I asking to much? This constant living at a solid 8 out 10 24/7 is getting old.
I'm feeling more and more depressed, I'm unhappy with the way things are here at home. I miss my daughter terribly and I know 21 is an awful age and she's been thru a lot with me. My therapist believes that she's putting distance between us, so that she thinks it won't hurt as much when I die. Of course, I know to have your Mom pass away is a terrible loss and it hurts no matter what. I wish she'd listen to me, cause I know she's going to regret that she didn't call and check up on me or spend time with me once I'm gone.
Poor hubby is on call 24/7 and I really believe he's burned out. I really wish I could talk him into going to see his parents for a week. I keep assuring him I'll be fine on my own, but he won't go w/o me or having our daughter here to watch over me. He really doesn't get that I hate being such a huge burden on them. I know I shouldn't worry what others think but I do, that's just the way I am.
I know that I'm worried my friend is upset with me for raising my voice and pounding on the counter about
my childhood and teenage years with an abusive parent. She said something to me that really now has me thinking that maybe the abuse was my fault and maybe I should have done something once I was a teenager. Gosh I just don't know, guess my shrink will get an ear full tomorrow.
For now, I'm going to sit on the couch with a heating pad for a bit and hope to ease the pain in my back and hips so that I can go lay down to sleep. I hope you are all doing better than I'm doing right now. I'm sorry that I've been away, but I'll try even harder to post more often. Between not physically feeling well and mentally being down, I feel like Debbie Downer and you've all heard it before from me.
I'll be keeping you all in my prayers and for the new members welcome to our forum and hopefully, I'll be able to respond to some of your posts soon. Hang in there if you've not gotten your DX yet. Lupus is really hard to DX. I've had this dreaded disease for 26 years and it took my Dr's 13 years to finally begin to treat me. I truly believe that if they would have treated me sooner I wouldn't be so sick today. So, to those of you who are new keep at those Dr's don't let them talk you into it being in your head or anything such thing.
Take care everyone and I'll post soon I promise.
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.