Life & Stuff
Well, where to begin.
I've slowly climbed my way back to feeling somewhat better. But, what really irks me is that I had to resume taking my weekly methotrexate injection to start this. I've always resented having to take that drug & with it being hard on your liver & now not having my gallbladder to help the liver, well, now I'm really really irked abt it. A strong goal is to get back to a better place where I can drop that drug again!!!
The night I spent in the ER last wk really puzzled me on so many levels but once that dr explained things the way he did it's like the light bulb finally came on. A normal immune system releases stress fighting hormones/chemicals to help keep the body in control & being immune suppressed mine can't hence it just totally quit & collapsed.
My eyes are probably more open now then they have been in I don't know how long. Re my dad-I was going to the hospital in the mornings on Thurs, Fri, Sat, Sun & usually Mon. There is now way I can maintain, me, hubby, home stuff & that also. I've cut back on the hospital visits & it's sort of working out I think.
We had a meeting at the hospital yesterday. Dads dr & therapists & the home care co-ordinator were there. I had been wondering abt assisted living or palliative care but his dr discussed how he does not feel dad is at that sort of point yet. They want to send him home & some of what will be set up is a home care visit up to 4 times a day which will cover personal stuff & ensuring meds are taken. Meal deliveries is also on the table. A Lifeline thing will also need to be put in place for emergencies & there will be certain pieces of aid equipment which will need to be set up. When I stop & look at this at this moment I feel like I want to shake my head & just "how am I going to handle this". My brother lives a bit out of town so it's hard for him. My youngest sister at least I know will help to a certain level. My other sister, two yrs younger then me is, well, lets say, just weird, strung out, uptight, screwed up & just out there somehow that I really feel I need and so far am keeping her at arms length. At least I feel I'm focused enough on me that I can thru prayer, meditation & faith take no more then each day as it's presented & go forth. I've closed myself off fr the family politics & believe me there's more then enough to go around with my two sisters. Does any of this make sense to anyone?????????
One thing hubby & I noticed at the meeting was the black negativity bouncing around the room. I would only put forth positive say thoughts, comments, etc. etc. & it almost seemed like my family thought OK whats wrong with her LOL. My sister in law did comment afterwards that she admired that & appreciated it, so that made me feel good. I believe that surrounding your life with nothing but negativity prevents you fr being able to grow & move on.
At this very moment I'm looking at the words on my screen & thinking what would I ever do if I didn't have you dear dear friends to open up to & vent to. Boy, you are all worth more then I could ever find words to describe.
During all this time I find my best personal therapy is at the cat shelter. The few hrs I spend there just rejuvenates me. There's something abt the love you get fr them all & how they seem to adore you for just being you that man is it good medicine.
I think I'll sign off for now before I start babbling too much. Going to go get caught up with everyones news.
I've slowly climbed my way back to feeling somewhat better. But, what really irks me is that I had to resume taking my weekly methotrexate injection to start this. I've always resented having to take that drug & with it being hard on your liver & now not having my gallbladder to help the liver, well, now I'm really really irked abt it. A strong goal is to get back to a better place where I can drop that drug again!!!
The night I spent in the ER last wk really puzzled me on so many levels but once that dr explained things the way he did it's like the light bulb finally came on. A normal immune system releases stress fighting hormones/chemicals to help keep the body in control & being immune suppressed mine can't hence it just totally quit & collapsed.
My eyes are probably more open now then they have been in I don't know how long. Re my dad-I was going to the hospital in the mornings on Thurs, Fri, Sat, Sun & usually Mon. There is now way I can maintain, me, hubby, home stuff & that also. I've cut back on the hospital visits & it's sort of working out I think.
We had a meeting at the hospital yesterday. Dads dr & therapists & the home care co-ordinator were there. I had been wondering abt assisted living or palliative care but his dr discussed how he does not feel dad is at that sort of point yet. They want to send him home & some of what will be set up is a home care visit up to 4 times a day which will cover personal stuff & ensuring meds are taken. Meal deliveries is also on the table. A Lifeline thing will also need to be put in place for emergencies & there will be certain pieces of aid equipment which will need to be set up. When I stop & look at this at this moment I feel like I want to shake my head & just "how am I going to handle this". My brother lives a bit out of town so it's hard for him. My youngest sister at least I know will help to a certain level. My other sister, two yrs younger then me is, well, lets say, just weird, strung out, uptight, screwed up & just out there somehow that I really feel I need and so far am keeping her at arms length. At least I feel I'm focused enough on me that I can thru prayer, meditation & faith take no more then each day as it's presented & go forth. I've closed myself off fr the family politics & believe me there's more then enough to go around with my two sisters. Does any of this make sense to anyone?????????
One thing hubby & I noticed at the meeting was the black negativity bouncing around the room. I would only put forth positive say thoughts, comments, etc. etc. & it almost seemed like my family thought OK whats wrong with her LOL. My sister in law did comment afterwards that she admired that & appreciated it, so that made me feel good. I believe that surrounding your life with nothing but negativity prevents you fr being able to grow & move on.
At this very moment I'm looking at the words on my screen & thinking what would I ever do if I didn't have you dear dear friends to open up to & vent to. Boy, you are all worth more then I could ever find words to describe.
During all this time I find my best personal therapy is at the cat shelter. The few hrs I spend there just rejuvenates me. There's something abt the love you get fr them all & how they seem to adore you for just being you that man is it good medicine.
I think I'll sign off for now before I start babbling too much. Going to go get caught up with everyones news.
Replies
Good luck getting off that drug...know that you can do it! I will be back over the weekend but know that you are in my prayers with all these stressors...bless kitty\'s kitty therapy! Xxoo
You can vent to me any time you want to, thats what this place is for. Prayers and being here for one another. I wish I was able to come there and help you .All I ca no from here is to pray that God see\'s you through all of this and sends good people to help with your dad. I totally understand the family stuff, been there when my mom was sick.I love you sweetie and am here fr you. Call me any time. Your always in my heart and in my prayers. I only wish the best for you. Love , Frieda
Lots of love and hugs to you, precious friend! I can relate to the stuff you say, so it makes perfect sense to me. I hope everything works out well for your Dad and I\'m happy to hear that you enjoy being at the kitty shelter so much. Those four footed critters are the best medicine all around.
Hugs and love and lots of healing energy to you!
I\'ve always known, but often wondered why, stress is so detrimental to us Lupies. Now I understand as well, thank you.
I too am trying to live in the moment, take each day as it comes. Some days I could actually do without though, haha.
I was my mothers medical advocate during her very short time after being diagnosed with pancreatic cancer. It was horrible on so many levels. Dealing with this I also had my 2 sisters and my brother, all of their drama and family dynamics to deal with, and friend it. is. too. stressful!
Take good care of yourself and know you are loved and we wish we could take this from you. Wishing only the best for you
Hi my dear friend. Don\'t know how I missed this entry, as I do keep checking back every few days. hmmmm. Well, I do so very much know what you are feeling. You know something is Too Much for you, yet you can\'t see any other solutions. God can make a way. If you can back off the hospital visits until you are needed in person, that might be good, but it sounds like it might be past that now. I\'m so sorry for what you are going through. I\'ve been there recently too. You and I need to wake up each morning, give the day to God, and see where he leads/doesn\'t lead us I guess my friend.
Prayers and love and hugs. m
p.s. try to think positive thoughts about the mtx if you can. I think it helps the body to see it positively if the mind does. Ask God to protect your liver. : )