Today I had my follow up appointment regarding my newly diagnosis of Raynaud phenomenon in Iowa City ….well, I thought that was the reason for seeing this vascular doctor today. Really though, everything seemed like a whirlwind and I’m not sure what’s going on.
Right away the vascular surgeon admitted to knowing nothing about Fibrosing Mediastinitis so I knew where this was going to lead to. It was like I didn’t even have a chance of him figuring things out for me. One comment of me saying I can walk about 20 minutes before my hands and feet get so numb and tingly that I have to stop walking, was enough for him to conclude I don’t need surgery and it’s not peripheral arterial disease??? Which, I never thought I did need surgery??? And I thought I had Raynaud phenomenon??? He immediately went on to say how I would benefit from seeing a different doctor….very few questions or discussion was had about the rest of my symptoms.
Even though I expect stuff like this to happen, because it happens a lot, I was still confused at how fast he was pushing me off to somebody else. I tried asking about the meds the ARNP in his office had offered to me the last time I was there but he said the meds probably wouldn’t be good to take because of my “other disease”. He said for instance, today my symptoms probably aren’t bad and I don’t want to be taking a lot of meds with my “other disease” because I might not have symptoms every day? But…isn’t the point of taking meds to stabilize and make every day symptom free?? Next thing, he mentioned me possibly having Vasculitis and referred me to a rheumatologist???
I was still confused by the referral and I know I shouldn’t have snipped but I did get in a little dig to the nurse that I should’ve just taken the meds when they offered them to me at my first visit.
My mother in law took me today due to the fact that Tim just started a new job and can’t get off work yet so I did try my best to behave! Haha. Honestly though, I’m not sure I will follow through with this referral and might just wait to talk with my regular lung and heart doctors next month. Because after today, I’m not sure what they think I’m dealing with now?? Way too many different diagnosis’ were thrown out at me today!?
But regardless of such a frustrating appointment…it was a beautiful day for a drive and I had some wonderful company between my mother in law and Asher! And wow…I’m pretty sure Asher wore himself out from talking the entire trip!😜💕
On the way home my mother in law had asked me what positives we could bring from this and oh boy…I instantly realized how Tim might feel when I’m trying to be optimistic with him while he’s working his 17 hour shifts haha. I joked with her to give me a few hours because I think it was pretty obvious as to how frustrated I was.
But as time went on and my heartrate began to settle, I was able to put things back into perspective. The positives out of this appointment?? Well, while I see my mother in law all the time, we were able to have some one on one and I got to learn a little more about who she is as a person and not just as a grandma! I got to spend the day with my sweet boy because pretty soon he will be in school so these little trips will be no more! And…I guess I should be thankful I don’t need surgery…for whatever reason the doctor had in mind before talking with me!
Thank you all for the prayers and encouraging messages you sent me today…I had a good laugh over some of them!!😂😂😂 God’s got this!!
Enjoy your weekend!