8/19/16
I am still very sick. The good thing is my new PCP had a PA that is on myside! I am going weekly to her. We are adding meds and taking me off meds. I got an awesome referral to a great neuro doctor! Also, our Pain Med doctor sent out a letter to every neuro doctor in the hospital in which our Pain Med doctor is in within the area of downtown Dallas. My new Rheum doctor has all my blood work back. My xrays show really bad arthritis but not in my hands. Before he put me on a higher dose of methrotrate; in the morning my hands were really bead and swollen and could not move them for hours. We go in Thurs. for the results of my blood tests. This is great! My gastro doc is calling me weekly or her nurse is. I have been getting many xrays on the stomach. The news is not good but we are working on it. I don't have cancer so thats good. But my bile gastritis is moving up my esophogas. Not good! Very painful and is a cancer risk is higher. We are praying hard right now! The doctors are working hard on me to fix what is broken. Yesterday the PA found a lot of tightness in my left lung. I got an xray today. I don't want pnuemonia!! We booked a cruise a year ago. It is next Saturday! I have been in bed since the last time I wrote in my journal here. I will go because my husband has been so good to me. The PA has promised to help me thru the cruise with advice and meds. She said when we get back we will be sending me to Physical therapy because my muscles are falling. She also advised us what shoes to wear because she is terrified I'm going to break my hip because my test results of my bone density test showed that I failed. I am praying. I swear when I started DS I was not this sick! I don't know what happened. I did find out that the Mixed college vascular disease is a worse case of MCTD. It takes everything that a rhuemaologist has studied and has to apply it to patients with this disease. I've got a tough road to haul but I can do it. I'll keep you posted. I miss you guys! I'll beat this. I've got some of the best doctors and one tough PA on myside now! We have hope now. Thanks everyone for your hugs, love, and prayers!! I need you guys. Love, Gail
Replies
In spite of all of this, you have a great attitude! I hope you enjoy your cruise and will soon be on the mend.
Mary Ann
We haven't had much contact through DS so far apart from the hugs exchanged today, but I'm already loving your attitude as I read this! That's a lot going on for you, and would give you more than enough reason to vent, but you still end your post on such a note - wonderful.
It sounds like your medical support team is really on point now! That makes a huge difference. It's great that they're supporting you on your decision to take the cruise, and not let all the negative things take over all the positives. I hope you'll feel well enough to enjoy it to the fullest and recharge your happiness-batteries some!
Hang in there and DS is always here when you need it.