Climbing the walls tonight! Hey family
AnonymousApril 21, 2009 at 1:02 am
Hey family! Well it has been a very long 4 months. Got my mom finally straightened out and she is now back at home. I did so well but was getting very exhausted. Stayed exhausted. Even had pity parties at times because it was such a struggle.
Well anyway to make a long story short. Right after I get my mom home I went into a nasty Lupus Flare and it’s attacking my nervous system again and the Neurologist also saw Vasculitis in a mild form starting to happen. CNS Lupus is back again to once again haunt me.
They uped the prednisone levels to a high dose again and uped my Gabapentin and then sent me to Pitt Trauma Center in Greenville. Seeing a Professor of Rheumatology there because my Lupus has been a pain in the A!
Anyway they have me scheduled for that Chemo drug Anthrazphine. Mispelled. Same thing Gary is taking. They got me scheduled for May 12th.
I dread it! And I’m scared!
Tonight I am having a time! This humidity we are having in NC is driving my body nuts. Making me numb and tingly all over.
So tonight I am climbing the walls.
Hopefully this flare will go away soon and I start feeling better!
What hurts me so badly is because of me caring for my mom, I ended up getting sick again and what really tears me up is if she gets in a bad way again, I already know I won’t be anle to physically help her. Meaning I will have to place my mother either in a home or assisted living. And I hate the thoughts of even having to do that. Andy is helping me right now with her and I am blessed that he is being there for me! But it’s just not fair to him to be caring for us both.
Life can sure throw some punches. Other than that! I would be fine, but I’m not fine. I’m depressed. I was hoping this spring was going to be different than last summer. Was doing so well. Now I have to start all over again trying to get myself well again! I hate having CIDP and Lupus. It stinks being sick.
Then tonight because it is so humid in my house. I had to open up the windows to get some fresh air because my asthma is acting up something aweful.
Sorry family! I needed to vent! I have had 4 months of hardship and right when I thought things were going to finally get better. I lland myself in a Lupus Flare and get placed on stupid bedrest which I hate doing and here goes no telling how long this flare will last.
You know! I felt like I did a very good deed in life by caring for my mother. And I really try to keep my faith. But it’s just not fair for somebody like me to do such a good deed and then feel like I am being punished.
Don’t you all get tired of being sick! I know I do! Never can plan anything because of it. Just a never ending process that never ends. Get well, get sick, get well and get sick! Over and over again! I hate being sick!
I really had my heart set on coming in here and sharing my good experiences I had in life. But the past 4 months were not so good.
Only good experience was me finding two kittens under my house again.
So now we have two more furr balls in my home. While caring for my mom one of our older cats died after having her for 8 years. So we lost one and gained two.
They are really cute though! Hopefully I can get those photo’s in here to of my new grandbaby And our new furr balls!
Well I better try and get myself some sleep. Going to try but I doubt I will be lucky tonight. Betwwen headaches, numbness and tingling, vomiting, upset stomachs, and fatigue. I am trying so hard to not give up! I’m a fighter! Yes I am! But every now and then I get tired of fighting this stuff.
Norb! I went to the Tavern and ordered 4 of your drinks. Maybe that will start a good old fire here in NC! Hugs
AnonymousApril 21, 2009 at 8:48 am
🙂 Hey Linda, Glad you’re back! sorry you are feeling soo bad. I can’t offer any answers to your questions, as I myself have asked those same questions and haven’t found the answers yet. I keep going by the old addage of “what doesn’t kill you, makes you stronger”. Come join the Superwomen Club!!!!:D With all the hard work, I’m sure in the end the rewards are well worth it!;) Can’t wait to see the pics! Take Care and REST!!!!:)
AnonymousApril 21, 2009 at 9:54 am
Hello Cheryl! Linda I know you are not feeling well and life is throwing curves right now but soon you will be hitting curve balls out of the park again! Don’t dwell on the past and the hard times! Think possitive and about the flowers and garden. Sitting out under the awning watching the veggies grow! Think of the things we are able to do and enjoy them! You are doing alot! You have been doing things to make my life very exciting. Any little small changes make a day better. Getting a note in the mail or a phone call. Just hearing from you on this forum is an indication that things are better for you and your family. Change is slow and as you know so is healing. You gave alot for your Mom to get her back in her home and now it is time for you to heal and take care of yourself. You can not meet your goals if you don’t make any for the future! Mine for the rest of this month is to enjoy the sunshine! I am going to try and get outdoors each day and pull a few weeds from the flower beds. My larger goal is to get them all cleaned out by Memorial Day and enjoy that weekend on the patio! Today, I just want to get a load of laundry done! Anything above that is just icing! I can not wait to see a photo of the kittens!
AnonymousApril 21, 2009 at 9:25 pm
If I can just keep my food down and quit loosing it. I might just feel better. Lupus alway’s seems to attack my intestines too! I have lost 21 pounds when I weighed myself this morning. Normally when I am on high does of steroids I gain weight. So far no weight gain happening just yet!
I’m glad to be back. Hopefully tomorrow if I feel okay I will try and download those photo’s! Let you meet Starskie and Hutch! Hugs
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