After the rounds of doctors appointments this month, the unanimous verdict is that I’m stalled, if not a little worse.
The inflammation in my left eye isn’t budging, and now the doc sees “old inflammation” in my right eye. Oh, and the pressure within the left eye is rising. Fantastic.
The rheumatologist appointment wasn’t much better. My blood work was slightly raised for inflammation markers. Only slightly, but they were perfect in November.
The docs are going to put their heads together and decide if I need to go up on the steroids or do something else.
I did talk with the eye doc about the information I have been finding online regarding pars planitis and uveitis. He knew who the doc that heads the eye clinic in Boston was and seemed to be pretty pleased that I was looking into it. I made need laser surgery in my eyes if the inflammation does not improve. Maybe they can throw in LASIK since they are going to be pointing a laser beam into my eye anyway (that is a joke, I’m not a candidate for LASIK. I asked about it previously and the doc gave me this funny look and said “don’t make this too complicated than it already is).
So I did get new meds this week, a superdose of folic acid to hopefully offset the side effects of the methotrexate, and eye drops to hopefully lower the pressure in the left eye.
I still have the lovely rash, and though it is not as itchy, it is still present. Rheumatologist states that this is probably related to the steroids (yippee), but if it doesn’t go away after a week of using hydrocortisone cream (fight steroid with more steroid), then I’ll more than likely have to see the dermatologist. Let’s just add another doc to the mix.
My husband discussed with my eye doc at length about the memory and brain fog issues I’ve been having. This scares me to death. I used to be so “on” and organized. That is what made me such a good hospice nurse. I could logically prioritize what needed done and when without much effort. Now, it is a nightmare. I can’t logically sequence anything anymore. My husband said my brain used to be “automatic, like a computer”, now I’m not sure if I could win “Are you Smarter than a 5th grader?” Several times a day I have to remind myself what needs done and in what order. I practically have to write it down and follow a list. I have no memory for numbers and names like I used to. I actually have to make a concerted effort to remember anything. Even my husband’s phone number.
The doc doesn’t think its related to the actual disease process, but more of a product of stress caused by the disease process. His suggestion? Yoga, exercise, relaxation.
I know I need to get moving. I’m now 40lb overweight and what scared me even more is that I had a spot accucheck done yesterday, 4 hours after my last meal. It was elevated. Only slightly, but I usually run right on target (80s). The glucometer test wasn’t enough to indicate diabetes, but it was enough to have it monitored.
I am terrified of diabetes. My family has a horrible history with it. My great-uncle lost both legs as well as a great-aunt (one leg). My grandpa had diabetes. So far my dad doesn’t have it, and no one in my generation of the family has it, but I think my shot at getting it (ha ha…shot) is something like 30%. I need to watch it. I need to watch my intake and I need to exercise.
But it is so hard. Carb cravings kill me. I’m worried that they will up my steroid dose and then the cravings will be more intense. My husband says “well, just don’t eat it”. Its not that simple. I mean, these cravings are intense. I want cookies, bread, juice. And Sunshine is selling girl scout cookies, so now I have two cases of delicious cookies tempting me in my living room.
I have never, ever been like this. No one would ever have mistaken me for a super model, but I was pretty much on par as far as BMI goes. This “fat” thing horrifies me. I know I look like a hippo. Hell, I feel like a hippo. And I hate the body changes internally, not just externally. I have increased incidences of gastric reflux, and my systolic blood pressure was 20 points higher than normal yesterday.
It really does suck when you “know too much”.
But, looking at the bright side, I am drinking more water. I only do the ginger ale thing when I’m nauseous (which is about three times a week right now). But I am doing better in that department.
I am going to try again tomorrow to get some exercise. I am completely exhausted from running around all day today.
Tomorrow is a new day with this reality.