another appointment

Went to see the nephrologist today for a follow up as they think there may be some kidney involvement going on. So I have to leave a urine sample first thing when I get there and then wait for it to be looked over. So I go to the room and the doctor said that there was a little blood in my urine and wanted to look it over more closely. I wasn't really surprised as the past several months it has been hit or miss that I have either blood and/or protein in my urine or both.

So she comes back about 5 minutes later and the attending (very nice perfect speaking Indian doctor) says to me, "how are you eating these days?" and I answer him since I am an honest person, "probably could be better." He inquires why I'm not eating well and I tell him all about our diet. He said that I have key tones in my urine and the only reason I would have key tones in my urine is if I have diabetes or if I am starving myself. I assured him that I was not starving myself and that the diet we are on is no carbohydrate diet. He said that wasn't good and that I needed at least 8tsps of sugar per day.......so tonight we had pizza for dinner.....and it was good....REALLY GOOD!!

He also said that I was an interesting case and that I have an interesting disease and that he and the other specialities involved in my care are lucky because by having me as a patient they will one day be able to help other people with my disease and properly treat them. I agreed as I mentioned that I was a guinea pig and he looked at me and said, "yes, but a good guinea pig." Not really sure how to take that, but whatever!

They still think that there is kidney swelling but again decided against a biopsy due to the fact that WE ALL KNOW that I have inflammation in my body.....it shows up on every test and is obvious most of the time when you look at me. So since we are already trying to treat the inflammation there would really be no different course of treatment for the inflammation of the kidneys. One of the downsides about having kidney involvement is that I can't have any NSAID's medications. Of course NSAID's are anti-inflammatory medicines like IB Profen, celebrex, etc. So now steroids are the only thing trying to fight against the inflammation......I continue to have good days and bad days.

My humira was supposed to be ready for pick-up today and I was looking forward to starting that as I had to hold off on the methotrexate again this week as my liver enzymes were still very high (yet trending down apparently). So my mom went to the pharmacy to pick it up for me and they told her that my insurance won't cover it and that it is about $5,500.00 out of pocket. Yes- that is over FIVE THOUSAND DOLLARS.......so I will see if my doctor can call it in another way....if not I guess I have to suffer or they need to find me something else....I know my health is worth a lot more money but I definitely don't feel like taking out a loan to pay for medication. I was really surprised too because we have EXCELLENT insurance. Only pay co-pays and nothing more. Didn't pay a penny out of pocket for Owen, Wyatt and even my last week long hospital stay which totaled almost $30,000.00 .

Did I forget to say that I am blessed? Truly blessed!

We are gearing up for a nice family weekend celebrating the resurrection of our Lord and savior. He died for our sins and soon will be risen!