Posted 2/6/2015 10:33 PM (GMT -7)
First to all the new members welcome to the Lupus forum. I'm sorry that I've not come on and posted on your threads, but I have read them. I hate it when I read on here that more and more folks are getting hit with the stupid disease. I know how hard it is to cope with everything that happens with it
I'm sorry that I've been away and not keeping everyone up to date. I'm just so blasted weary now, coping with Lupus is bad enough, then when you add on other disease and such well......... The RA, Fibro and Lupus are all flaring up in this cold weather here. Of course, they are so much alike it's hard to say which one is bad.
i believe I mentioned that I've now started having issues with Lupus Profundus and the Dr started me on Dapsone for it. This is a medication to treat Leprosy and it has some nasty side effects. My Dermatologist wanted to give me something different than what my Military Doctors wanted me to take. My Dermatologist is a civilian Dr and I'm trying so hard to get all of them working together for my own good.
I'm finding the biggest problem with the new medication is that it breaks down a persons red blood cells. Well, with my leukemia I don't make enough red blood cell as it is. I require blood transfusions frequently and now with this medication destroying the ones I have my Oncologist said don't be surprised if I require weekly blood transfusions.
For years now, I've been turning blue/purple when moving around and such. Well, with the Dapsone, I'm always blue or purple. Strangers even stop and ask me if I need assistance, even though I'm using my oxygen 24/7 I'm requiring more and more of the stuff. I've returned to pulmonary rehab and my O2 stats are very low when I'm walking on the treadmill. I drop down to around 80-85%, my therapist has to pump up my oxygen to 5 liters. When I'm just sitting around or resting I'm at 90% most of the time.
Still having major issues with my left foot, the plan is to take me back to surgery in March. That's, IF, the anesthesiologist will be willing to let me go to the OR. If I'm cleared for surgery, the surgeon will open up the heel of my foot and dig out whatever, he used to anchor my tendon to the bottom of my heel. He will also shave the heel bone so that I don't feel like I'm walking on the bone itself. It's so strange to see, exactly where he put the probe and attached the tendon, the skin and tissue just peels away and it's dips down into the tissue. I then end up with this huge sore on my foot and it never heals. I've been told straight up, if we can't fix my heel of that foot, my surgeon will have to amputate my foot and part of my leg to just below my knee.
I'm having issues with pericarditis again and the cardiologist talked with my Rheumy. My cardiologist can hear the rub when listening to my heart, so I'm collecting fluid around my heart again. So, I'm now up to 35mgs of Prednisone daily and I feel so shaky inside, sleep whats that stuff. I know that Lynnwood put in an update for me. I tripped on the carpet in our hallway and hit my had on the wooden door frame. We were certain in was broken, it was so swollen and purple. Well, I didn't break it and I'm now able to use the hand to type now. However, sometime yesterday, or maybe while doing PT on Tuesday, I broke my ribs on my left side.
Yep, here I go again with the broken ribs. I had a total of 15 fractures last year and really didn't do a darn thing to fracture them. I didn't notice the pain on my left side until yesterday afternoon, we were getting ready to go pick up my daughter at the Philadelphia airport. She just spent the last 30 days in Hawaii doing a Study Abroad for college. Let me tell you it was a LONG drive in the car for 2 1/2 hours. The wind was terrible and I hurt so badly. Plus, to top off everything else the Dermatologist informed me I have a wart in the ear and I may require radiation in my ear to get rid of it. You, remember all the radiation I did on my hands to get rid of my warts. This is scary for me cause won't the radiation go into my brain? Need to see the ENT first then I'll let you know on that one.
I'm not sure whats really going on in there, but these ribs hurt a WHOLE lot more than the fractures from last year. I'd say on the pain scale I'm like a 9 out of 10 right now. Hubby informed me a bit ago that if I look and am moving as badly as I do now, in the morning, we will be going to the ER. I can barely move I hurt so bad, and when I move it pops inside of me and I can feel it. Have to admit I feel a bit sick when it moves, I'm not sure if I should buy a bunch of ace wraps and have hubby wrap my chest up or not. It feels like the ribs that are broken/fractured are at the bottom down near my waist.
I'm still seeing my therapist weekly, I'm trying to stay focused on the good things in life, but I'm WEARY. I've been so sick for so long now. My 50th birthday is this month and I used to wish and pray that I wouldn't live to that age. I know I should be thankful for all that I have and I KNOW there are folks who are WORSE off than me. I just can't continue to fight anymore, I've been sick since I was 17. I've been on steroids for 14 years straight I've NEVER taken anything less than 10 mgs a day and that was only a couple of times. I'm normally on 15-20 mgs daily and when I flare it goes up to however much I need. The most I've had was 4 years ago at 100 mgs daily for 2 months.
When I found out that the possible treatments I've taken to treat this stupid disease, or the disease itself, has caused me to get LGL Leukemia and it's not curable, I thought GREAT, WHY the heck me?? I know that 2 years ago I was told that most LGL leukemia patients live 5-8 years some to 10. That most of us do not DIE from our leukemia, but infections. I've had several close calls over the past few years. Am I wrong to want my leukemia to take me out and soon? All I do is go to the Dr or Medical Center. I have ZERO quality of life anymore. I feel so unattractive, a huge burden on my family and I'm just so, so tired of all of this.
I have to say that my PCM, whom she was assigned to me out of Medical School, is now leaving. We've been together 8 years, I've watched her go through 2 pregnancies and she's been such a good Doctor to me. She's upset about having to leave me and I'm so upset about her leaving. I'm considering stopping all my medications and just let things take it's course. My hubby has suggested, as has his sister, who is a Doctor, that I take a "drug" holiday. I wonder what would happen if I stopped all medications. I mean according to my Oncologist, IF, he's correct I've only got 2 to 4 more years to live come this April. Maybe 6 some would say if I'm lucky, not sure how to consider that lucky as I'm going to get sicker, so he says.
I'm sorry for the long post and the vent. I don't mean to scare or bring down the NEW folks. Not everyone gets really sick with their lupus. I truly believe that since my Doctors waited 13 years to start to help me, it was just to much for my poor body to take. My daughter will be 22 this month and she'll graduate from college in May. I think she's learned all she's gonna learn from me and with time she's no longer "need" me around. My hubby would NEVER say that he'd be happy I was gone. Heck, our 30th wedding anniversary is this June. However, he wouldn't have this huge burden anymore to take care of. He could start to travel again and not worry that I might die during the night. Like he said " I'm not dying on his watch", once I'm gone he won't have to worry about that.
I'm going to stop now, I've written a novel and I just needed to get this off my chest. I know that each and everyone of you understand what I'm feeling, you all GET IT. My family doesn't, and when I'm brutally honest with them, they can't handle it and get really upset. I don't want to upset them, I love them more than anything. I just want my pain and suffering to stop and I want them to be free of the burden of me. If you pray, please pray for some relief from the broken ribs for me. If you don't pray then positive healing thoughts and energy would be greatly appreciated. I'll let you know either by me posting or a phone call to Lynnwood tomorrow to give an update.
Have a good night, hope your weekend is pain free, feeling well, and just enjoy it. Thank you so, so, so, much for listening and reading this.
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.