Checking in after Cleveland Clinic visit

[drz]

Well I got thru another infusion on 6/29. They gave me IV Solemedral, Tylenol and 780 dose of RTX. They told me that they were just going to give me the one dose at this time and make it an extra strong one. I was so shaky and afterwards, so I've been in hibernation since then. I did get a some coughing, low grade fever, aches and nausea, so took the Benadryl and Tylenol every four hours for about 24hrs. I was suppose to make a follow up appt. with Villa-Forte in two weeks and then I get a message that they scheduled another Tx on Tuesday, I tried to call on Friday and could not get any answer, so cancelled it online, until I talk to someone about this. Meanwhile, the Neuro had ordered a Cervical x-ray and I have a mess to deal with there now, from all the steroid usage over 5 yrs. I am so sick and tired of all the complications of this ugly, crappy, totally unpredictable disease. I had gotten down to 9mg of Preds and had to take it back to ten because of the joint pain, maybe I can try again soon. Just looking for a break somewhere in all this.

Hope you get a break soon from the disease that often just seems to keep on giving us more to deal with. You would think that we would be like the premium travelers on the air lines that get extra red carpet service because of all the business we give them. Too bad we don't get frequent flyer miles or points on a reward card we can cash in. Or at least some prompt personal responses to our questions and needs.

[Dirty Don]

Hang tough...breaks come when we least expect them. Here's some spoons...stay with the program...you'll get there.

[Jaha]

Hey I do like the idea of the rewards program, ha ha! Thanks for the keep your head up spirit, everyone, I'm just having a rough bump in the road these days. It seems the more I go see these docs that I'm suppose to, the more issues they are finding. I'm pretty tough, I will not let it take to big of chunk out of me, I guess I'm just going to have to step up my game plan on this war!!!!!

[Debbie C]

Well, not that I like it just wanted you to know I read it and am hoping some good comes your way soon. I wonder if Andrew can come up with another word to reply, as in "okay" or "thinking of you" and of course "following" then we don't have to like something that is not necessarily likable.
Dale

I "like " that idea Dale, I sometimes feel stupid liking something that is bad. Get on that Andrew !!!!

[Debbie C]

Hope you are feeling better now,Jana. Boy you do have a lot of crap going on at once. That's odd the way they did your infusion. Why did they make it so strong and then want you to have another so soon ??? Keep us posted on everything.

[Jaha]

I think it is odd that they had me do such a large dose, and told me I would not need another for awhile and then scheduled one next week. I cancelled that infusion and tried to get a follow up with the doc and could not get in to see her. They didn't have her call me back either. I have also been trying to get into see the Neurologist for a follow up and can't see her until Oct sometime. That's ok for now because, last weekend I began to have really high blood pressure and pulse, so I had to get that under control this week with my PCP. She had to put me on BP meds and up my water pills as I gained 10lbs in 3 days. She also gave permission to take my anxiety meds as prescribed, instead of using it to sleep with. The last two days I am starting to feel better and hope it continues. Will have to get back to the other docs later, one thing at a time.