Hello to all,
I wanted to keep some you updated on Chele's health. She had her Rheumy appointment yesterday and things went well. Chele's new doctor (new since 6 months ago) is treating her for Sjogren's and Lupus. It kind of floored us when we heard her say this. All along we thought her DX was Sjogren's with Transverse Myelitis. The doctor said that most of Chele's symptoms go hand in hand with Sjogren's and Lupus and she wanted to make sure Chele was getting proper care.
The doctor stated that Chele was lucky to only have the right side numbness from the Transverse Myelitis. Many times people are left paralyzed. Chele has been referred to a Nuero in our town so we don't have to travel to the University of Michigan any more.
All of her meds will stay the same. Chele wanted to cut back on the lyrica but the doc advised her to be careful. She can try not taking her morning pill but if there is any problem or the pain returns to go back to two a day.
All in all Chele is feeling better. She is breathing better now that we had a hard frost. She even came out to my workshop for a few minutes yesterday to she what Santa has been making for Christmas.
Even with all thats happen to her, she still shows that beautiful smile everyday! What has been taken away from us, God has returned ten fold!
God's blessings,
Mark....
Oh Mark, so glad to hear that Chele's doing Ok at the moment - sounds like you're lucky to have a good rheumy who's got the meds under control.
Let me guess, bet Santa's going to be busy making lots of presents, and that precious smile will be even bigger!!
Wen
Mark, I'm so glad to hear that things are better, and that Chele's wonderful smile, and your wonderful appreciation of it, haven't been lessened in any way by the ordeal you faced (and continue to deal with) together.
Great to hear from you Mark!. At least Chele has some nearby docs who are working out OK for her. That makes such a difference.
I wish we could see Chele's smile too. Certainly the way you care for her shines through whenever we hear from you, and it is an inspiration to us all. Take care and keep in touch.
Genko
Hi Mark :)
Thanks for the update. I'm glad Chele is doing a bit better because she's had quite a year of it! (and so have you. It's not easy for the nearest and dearest)
I have a dx of Sjogren's/lupus overlap and my rheumy seems to think it will mean that lupus won't manifest itself as badly as it can do. The treatment seems to be the same for both anyway. Gets different if other symptoms crop up but the base line treatment seems to be the same.
Take care - Scottie :)
Hi Mark,
Whew! we were getting worried. So glad to hear Chelle is doing better and has a wonderful new doctor. Sounds as though she is on the right track with Chelle care. ;D
Take care and I hope the winter is kind to all of us,
Give Chelle a hug (gentle) for me and let her know we are thinking of her. ;)
Hugs and God Bless,
Pooh
Hello Mark-
This is great news for your whole family. As the others have said, Chele' has had a really bad year. I'm happy things are looking better and she is feeling better. A big smile is hard to come by when you're down. My husband spends a lot of time in his workshop, too. I should visit him more often and try a big smile. He deserves it.
I am wondering about Chele's meds. You mention Lyrica and that she's trying to come off it. I am recently on Lyrica after a 4 month fight with the ins co to pay for it. How has Lyrica helped her? If you can give us any info on that, it could help the rest of us. Or-a PM about her meds to me would be appreciated. Thanks, Lucy
Hi ALL!!!! ;D
I am writing under Mark's id until I can get mine straightened out.
It is so good to be back. I want all you great people to know I have been looking " in " on you as a guest and have been praying for you as you have needed! I have not (and never will) forgotten all the wonderful help that was given to me as well as others in the last 2 years. The encouragement and kindness given stretches beyond us because these elements alone gave me and others strength to go on yet another day, and maybe even smile!
Lucy, Lucy, Lucy!! Girl how's it going for you today? If you've just been put on Lyrica, it sounds like major help is still needed for ya. I'm sorry. But you asked how Lyrica has helped me. Whew, more than I can ever say. I am now taking 100 mg every 12 hours. This was originally given to help the pain in my back and right side which was caused by the Transverse Myelitis. I, of course, had to work up to this amount. I still have pain that waivers between 3-4, but I have learned to manage with this - a thorn in my side, so to speak!! ;)
The Lyrica has given me what they call a "barrel trunk". It's like I have gained weight only in my upper stomach area (just below my chest). I don't like it, but it sure beats pain. It has also made me gain ' real ' weight, but so does 5 other drugs I'm taking. Yea, it's a lost cause. Oh, well. I think that in the beginning I felt a little dizzy for a while, but it went away after a couple of weeks. All docs have asked me to revisit the idea of backing off the Lyrica until next spring. We'll see. I'm just beginning to re-aqaint myself with the world. I don't want to go backward.
Lucy, I also have Periphial (?) Neuropathy in both legs. In order to get that under control, I was given Cymbalta. It did help with that pain, but sent me into a pit of dispair I never want to see again. To bring me back up, I was given Wellbutrin. Fun.
So with that said, I really hope it helps you Lucy. Pain is not easy to live with. A prayer of His help for you and that His loving hand will rest on your shoulder giving you some of His peace, strength, wisdom, and encouragement is being said.
I'm an open book, so if you think of something else, ask away!
Thank you all for remembering me. Thank you all for your kind words.
I hope to be back " on " soon! God's Blessings,
Chele
Thanks, Chele, for the information. It is helpful. I'm sort of at the beginning of Lyrica--but it's just a test. I'm between 200 mg and 300 mg a day and playing with that dosage. It has taken the numbness away from my face and I'm waiting to see what it will do with my muscle weakness in my legs if anything. I've fallen 3 times in the past year and half and know something is up on that. I've got two shiners and a bruised forehead and nose from the spill last week. I have an appt with a neurologist next week and we'll discuss Lyrica among other things. Glad you showed up again. Lucy
Mark and Chele, So glad to see that there was light at the end of this tunnel. It has been a hard year for both of you but you have stuck together and perservered. It makes life even better when a couple can endure the strain and stress of chronic illness.
Chele, it sounds like you have a good doc and that she is covering all the bases. So glad to hear that you asthma is better. Bad enough to have your other issues and then be really bogged down by asthma which really drags down a person physically and mentally.
Keep us abreast of how things are going. I am interested also in the Lyrica for my hubby. He has had neuropathy from the knees down for over 15 years and I think it is related to his Celiac sprue. The gabapenin is just not doing the job. Our insurance won't pay for the Lyrica so may have a struggle to get that paid for if he changes. Thanks for the information Irish ;D