Gotta Keep The Doctors Guessing!

Today was the start of more appointments in Iowa City again for the next month, and it began with dermatology.  I was referred for a second opinion in regard to my hands and fingers due to the extreme cracking and nasty indents in my fingernails. As the med student came in and introduced himself, he began flipping through the few pages I had filled out due to me being a new patient.  He looked up at me and says “so overall you are pretty healthy” and I burst his bubble by replying “not really.”

This of course led me to give my routine speech that I have a rare disease, I have 6 stents in my SVC, 2 stents in my PA, I have mild hypertension, it affects my lung and my heart and blah blah blah.  However, as much I as enjoy “the look”, his reaction was even better…it was the look of interest!  He would scribble down notes as I explained my disease then he began to examine my fingernails.  Every so often he would simply say “interesting” as he continued to move my hands back and forth to view them from all different angles. He did say that my fingernails do have the characteristics of a person with heart and lung diseases, therefore, he felt my FM was the culprit for my hands being so bad.  As he was leaving, he said he would have to research my disease and stated he would be back in to see me with the doctor.

Shortly after, both doctors returned and I reviewed my illness all over again.  This doctor also agreed that the curves in my fingernails were due to my coronary and pulmonary conditions, however, he pointed out that I also have a couple more issues going on. Go figure! As he was examining my hands he did notice I have extremely dry skin and then also pointed out that I do not have any cuticles.  Ok, sorry, this probably sounds like such a disgusting post…and it is! ha!  He went on to explain that lack of oxygen, which is a huge problem with my disease, can cause the damage that I have in my nails. He went through a list of ointments and lotions and creams that I will now make a part of my daily ritual. I will apply one ointment at night, two different ones in the morning, then yet a fourth one throughout the day. I did point out I have little children at home so constant hand washing is sometimes a necessity! He told me to do the best that I can. Personally, between my diabetes and my FM, I have enough medical junk to keep track of throughout the day but whatever, I guess if this helps, it will be worth it! Plus, I mentioned to the doctor I just want to be able to paint my fingernails again!! Then awkward silence followed 😉 While, the curving and some of the denting of my nails may not improve due to my FM, some of these ointments should help with the skin and the cuticles.  The hope is that I apply some of the lotions to my cuticle area, as he explained that is where the growth of the nail begins.  If we can get that area fixed up, hopefully I can begin to grow healthier nails and at least have some improvement with the appearance of my nails, not to mention improvement with the pain I feel at the slightest bump of my fingers.

Of course, the best part came at the end of my appointment as the doctor explained that the nurse would be in to take pictures of my nails.  This will show them if any progress has been made when I return in eight weeks for a follow up. As the nurse is taking pictures, the first med student takes out his phone and asks if he can take pictures as well.  I looked at him and he replies “it is for my own study” then jokes “no worries, it won’t end up on Facebook or anything like that.”  I of course told him that was fine as I was a medical mystery so if he wants to study me, go for it! Haha. I find that the doctors I had today are the best type of doctors…just like Dr. Hornick and Dr. Rossen.  They might not necessarily know all that is going on with me, but they are eager to research and see if they can’t figure it out. And with this disease being so rare and difficult to live with, I am willing to do whatever I can in order to help doctors find answers.

On another note, tonight is my LAST night with this heart monitor!!  I cannot wait to ship this thing off in the mail and even more, praying the results will bring answers to explain my continued symptoms of extreme fatigue, heart palpitations and shortness of breath!

Pretty boring stuff tonight, but for me, boring is good. I am happy with the way things turned out today. It is frustrating knowing that my fingernails may not get better completely, but we are at least trying something. It definitely beats them telling me there is nothing they can do and simply turning me away!

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