Lexington Specialists visits of 2-7 and 2-8-18 Update

Sue and I left for Lexington on Tuesday evening, Feb 7. The weather turned really cold and nasty on our drive to the motel, but we made it safely with the Lord as our guide. (And that wonderful lady in the GPS!!) Since I had appts on two separate days, we just decided to stay in a motel a couple nights. It’s a place called Candlewood Suites and I highly recommend it if you ever want or need to stay overnight in Lexington. Very clean and has a full kitchen. We love it. Anyway, we both rested well that first night. 

The next day, my appt with my Gastroenterologist was at 11:00. We did pretty good driving there... except for one incident of a man almost running me over as I pulled out into traffic. He pulled out from a road on down from where I was at the exact same time...only he had JUST got to his stop and I had been waiting for traffic to clear so I could pull out for about 5 minutes. So I naturally thought I’d go ahead, but HE must’ve gunned it because he ran up on me soooo quickly! Anyway... the Lord was definitely watching over us because we didn’t collide but there couldn’t have been more than an inch between our cars as he sped on by and gave me a VERY mean look! Sue gave him a look as we passed him on further down the road! He threw up his hands in that “what the heck were you thinking” way and she just glared at him, 😂

Soooo, we made it to my appt and it went pretty good. He is going to change one of my meds that I’ve been taking for the digestive issues. It hadn’t been working well at all. The only problem is that he’s changing me to Neomycin and Xifaxan, but our insurance won’t approve the Xifaxin and it’s very expensive, but he thinks it will help me along with The neomycin. For now, he’s giving me samples to get me going. I don’t know WHAT I will be doing when I run out of samples. He also told me that my lungs and heart sound really good. He assured me that my condition didn’t look to be as dire as I had been afraid it was. Sue and I both were so blessed to hear him say that he had rarely known of a Scleraderma patient to succumb to the disease with digestive issues such as I have. He told me that yes, it has been and will be life altering and unpleasant, to say the least, but he would do his best to help me through it. He even mentioned a new, rather “cutting edge” procedure that is being done for people with severe issues of collitus, Crohn’s disease and other such illnesses. It is a procedure that is called “Fecal transplant”. (It’s a fascinating process and if you are interested, google it!...You will be as amazed as Sue and I were!) He said that it is very expensive and may not be covered by insurance but was looking very promising for patients suffering with symptoms such as what I am dealing with. He told us that it could possibly be something we could consider in the future. But for now, he’s just having to go by trial and error as to my treatment. He was disappointed at my weight loss... 6 pounds down since my last visit.. but he understood why since I had been so sick from that one antibiotic not working while I was on it. I had to have my blood drawn, which is always a pleasant experience..NOT!!,...😩... and when she stuck that needle in my arm, I just about cried, it hurt so much! Other than that and the fact that I’m uncertain about being able to get the Xifaxin, I am happy with the results of my appt with the Gastroenterologist. 

We grabbed some food for lunch and for our supper that evening and went back to the motel for the evening. I didn’t rest as well that second night and neither did Sue. We both got up early so we would have plenty of time to get our stuff packed and get to my appt with the Rheumatologist by 9:00. We left the motel and were on our way. Only one incident as I was driving there and that was when I had merged into traffic from an on ramp and I guess the guy thought I wasn’t moving fast enough because he ran up on me and then as I glanced in my rear view mirror he was pointing up, but not with his thumb or index finger!! 😮😩. I assume he was a little annoyed with my driving! Oh well, me and Sue asked God to bless him real good and smiled and went on our way! Goodness, but people can be testy out there on the road in those big cities! 😮😳🙄

My appt with the Rheumatologist went pretty well. He was happy about the great results of the new meds he had prescribed for the Raynauds. I’ve had NO problems with it for a long time. He said my skin thickening, joint stiffness and pain would probably be about the same for awhile and that it may take up to a year for the Methotrexate and the Plaquinil to really kick in and hopefully-PRAYERFULLY- help with those issues. He informed me that he was actually leaving that office and that I would be seen by someone else the next time I go, which is in July. That was sad news, because he is SUCH a good doctor. But I will trust God to provide another doctor just as good and caring,,,and especially knowledgeable. After yet another blood draw which, thankfully wasn’t NEAR as painful, we were finished with the doctor visits!

We left Lexington, (after a side trip to White Castle insisted upon by my White-Castle-loving sister who HAD to have her slider fix or bust!!!), 🤪🤪 and we headed home to Green County. 

In summary, I was encouraged and very reassured by BOTH doctors and I feel better about my future as I face whatever lies ahead in this battle. I am thankful for all the prayers and concern for me as I travel this Scleraderma journey. Every thought, every expression of care and every mention of prayer for me from my “support system” is worth more to me than you will ever know. Your love and care is better and more precious to me and FOR me than any medicine and hearing or reading your encouragement is priceless at a time in my life when I truly, TRULY need it.

And I know I don’t have to add this “disclaimer” every time, but I just don’t EVER want anyone to think I share anything about my disease in order to gain pity. That’s not what this blog is about AT ALL!!   It is my way of informing those of you who truly care about what is going on with my health. And it is so therapeutic for me to have this outlet and to share with those I love and keep you up to date. So thank you to you who read this and show you DO care about me. 

Love you all. 💕💕💕

Update... just found out that my Gastroenterologist is NOT going to refill the meds (Ciproflaxin and Flagyl) due to the danger of me developing neuropathy from taking them too long. This scares me, but I’m trying to be hopeful that the new meds will work just as well... even better. Please pray that they will. Thanks so much. 

Update #2...I whined to them so much and your all’s prayers went up immediately so my doctor DID refill the two meds thatbwork the best! Thank you!