has been a little rough....I had three appointments at UofM this week. I called on Monday to see if I could get in to see my Rheumatologist a week early due to increased swelling, pain and discomfort in my wrists, hands, fingers and elbows. Also my feet have been a bit tender but my main concern were my hands, since well let's face it, you need to use your hands about every second as a mom of a 3 1/2 year old and 9 month old.
I was pleased that they were able to see me a week early. I walked in and again my doctor was a little surprised. I just seem to have her 100% stumped. I also found out at this visit that the doctor who discharged me from the hospital had me on the wrong (lower) dose of the Plaquenil so I received a new script for the correct dose (double what I had been taking for about a month). I was a little bit disappointed but also reassured that this mistake was found and corrected. I was also told to increase my Prednisone yet again. That's how it seems to go for me....I taper down to the lowest dose and then within a day or two have a bad flare-up and have to increase back to a high amount to manage my swelling. I was also hoping that the doctor would be able to inject steroids directly into my wrists or at least the more swollen of the two, however this was not an option because I had so many joints affected at this visit, both my doctor (a Fellow) and the MD believed that I had too much inflammation going on to prove this effective.
They also both decided at this visit that I would need to start the "strong" medication. I have had to do a lot of research on this medication and frankly it scares me out of my mind. It is called Methotrexate and was/is used as a chemotherapy drug. I will be giving myself injections once a week and was told about all of the side effects including but not limited to nausea, diarrhea and hair "thinning". I absolutely must not get pregnant while on this medication due to "severe" birth defects it can cause. Oh, and I must "keep out of reach" from the boys as it is extremely toxic. As much as I wish I didn't have to start this medication I also SO badly want to kick this in the butt and have relief that I'm willing to try almost anything.
My rheum also did more blood tests, a common practice when I see her. I think that the only thing that came back low was my iron, so now I have a new label.....Iron Deficient Anemia. I will have to take iron pills which can make me feel bloated. I'm praying not as I have tried my hardest not to let the steroids do anything drastic to my body. I long to be in shape and fit and at least look good on the outside for my husband and boys. It is very important to me and I think I would feel even more defeated if I gained a bunch of weight that I had no control over.....and since I can't easily work-out, I'm limited to "healthy" food....blah!
I also met with the Nephrology team this week who said that it seems like there may be some kidney involvement going on.....you see vasculitis is a small blood vessel disease and your kidney's involve small blood vessels, so why not?? We already know that it affected my colon so why not the kidneys? I think I had these docs stumped too! Everyone gives me about 100+ questions about family history and are just in shock when I continually answer "no" to:
1) no one has an auto-immune disorder
2) no one has colitis, chrones or inflammatory bowel disease
3) no one has vasculitis
4) no one has kidney issues
5) etc, etc, etc!
So now I will be followed by my rheum doctor, nephrology doc and gastro doc......
As always I am trying to stay positive and upbeat about everything I have been told. I know that I am 100% blessed and know that God has given me this God willing "temporary" disease for a reason.... I feel like it is to bring me closer to him, I started reading my Bible this week....one thing that I say that I am going to do over and over but yet it doesn't really happen. I want to be able to teach Owen and Wyatt about God's Word and be confident in what I am telling them. I want to live my life as a better Christian, a better wife and a better mom.
Thanks for reading my feelings for the day....it is early on a Sunday morning and as usual I can't sleep. My heart has been heavy for about a week now after learning about a tragic accident and I think that I am just flooded with emotion and desire to improve my relationship with God and my family............at the end of the day nothing else matters if you are in good standing with God!
