Sorry for the delay in posting this week; it’s definitely been a surreal & unexpected last few days to say the least. First things first…
Friday I had my 2nd MRI in less than a month to hopefully find something that could be causing my numbness & tingling in my arms, hands, feet & legs. It was a stressful day because there were many miscommunications between the MRI center, my doctor’s office & the insurance company. Originally, my appointment was at 10:30 am but I was contacted at 8:50 am and informed that I needed to head to the lab pronto (by 9:20 am)to get my creatinine levels checked before I could have the MRI. Turns out the MRI was ordered with contrast so they needed to make sure that my kidneys would be strong enough to flush it out of my system. As I was leaving to head to the lab, I was informed that my MRI would need to be pushed back anyway because there wasn’t a radiologist available to read the results at the location I was scheduled at. So… I still went to get my blood work done at a different facility and then later returned at 3:30 pm for my MRI. At this point I was frustrated because of all the back and forth between work & appointments not to mention getting poked and prodded yet again – I just wanted the week to be over. My frustration & patience was again tested when my appointment was postponed to 4:45 (yes that’s right I waited an hour & 15 minutes) since the MRI machine broke down (I think they could see smoke & fire coming out of my ears at this point…).
Finally, they brought me into the room – this machine was different from the first time – it was A LOT smaller (I was beginning to understand what claustrophobia was all about!) and I started to get really nervous! Since this one was for my neck, pretty much my whole upper body was in the machine – needless to say it wasn’t the greatest experience. Not to mention I wasn’t given headphones this time (just earplugs) so the sound was sometimes awful - not to mention the time where they had to redo some scans because I moved and the images were blurry. It seemed like it took forever – I was so happy for it to be over and I’m hoping that I don’t have to have another for quite some time if ever! (Wishful thinking though)…
Friday night Ed & I took advantage of a beautiful night (before the heat wave roamed into town) and walked to P.F. Changs for dinner. I hadn’t been there in quite some time – it was so yummy and the walk helped me feel a bit better. Saturday we had plans to check out Fish Day in Port Washington but I was unexpectedly called into work (My second job I work as a banquet server at a hotel) so we’ll have to wait until next year. I also received an unexpected call from my mom notifying me that my aunt and godmother, Judy, had passed away. She had been battling Huntington’s Disease for quite some time and even though we knew it was only a matter of time, you still can never be quite prepared for that phone call. She fought very hard & inspired me with her strength & courage. My heart aches for my Uncle Dale and my cousins Brian & Lisa. The fact that she is no longer suffering helps to soften my grief but I will still really miss her. Sunday we all (brother, sister, in-laws) went over to my parents house to spend time with my Mom (it was her sister) and had family dinner & just hung out. It was just nice to be together and know we had each other for another day.
On Monday, I got the call from my neurologist’s office (his nurse contacted me since he is on vacation) with great, good and not so good news. The great news is that I am not insulin resistant – so happy that I’m not going to have to monitor my food intake or add any medication to the mix. The good news was that the MRI was clear of anything major – no tumors, no blockages, no stenosis – much like my lower lumbar MRI, it shows bone deterioration and arthritis. Good news but still somewhat frustrating that there wasn’t a known cause for my symptoms. Where we go from here I’m not sure – I will speak to him once he returns from vacation next week. The not so good news was that my blood work came back abnormal. Us lupies know that this can be quite common but my ANA test came back more abnormal than previously and I also had a high anti-double-stranded DNA antibody count. The anti-dsDNA is a specific type of ANA antibody found in about 30% of people with systemic lupus. Less than 1% of healthy individuals have this antibody, making it helpful in confirming a diagnosis of systemic lupus. I’m told that a high count can mean my lupus is active and that it could be involving my CNS and kidneys. My neurologist says this makes some sense and could be the cause of my tingling, loss of feeling but we won’t know anything for sure until I see my rheumatologist (August 23rd can’t come soon enough) and run some more tests. As of now, my kidneys are functioning properly and my creatinine levels are within the normal range (they will be monitoring it since it’s on the high end of normal).
I’m taking it all in stride and relishing in the fact that I feel pretty good. I’m not sleeping well but other than that my energy level has been pretty good and I have been able to go to the gym twice in the last week. I’m not really sure what to think about everything so I’m just taking it day by day. Like I said before, I’m not really going to concern myself with the “suggestions” & I’ll wait until I see my rheumy. I have gotten some great resource/support sites from some fellow lupies that I will be posting later. I hope they will help you as much as they have me. Hope you are all staying cool while this heat “dome” is passing through Wisconsin & the midwest. My friends out east - its headed your way, prepare yourselves!
Till next time…
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