Sunday, December 28, 2008

Merry Christmas & Happy End of the Year!

Figured I should get on here at least once more before the end of the year.

No big updates, I've seen my nephrologist once since the MRIs, no big bad scary things on the MRI but I am waiting to see the neurologist in the beginning of January for details. It did show that I have arthritis in my lower back, no big surprise there. At least we know it isn't rheumatoid arthritis. Assuming the joint pain in the rest of my body is also more than likely arthritis.

For now I am keeping on with keeping on.

I have had rough days, but had some really great days over Christmas Eve and Christmas, which I was VERY thankful for. I had been worried about handling all of the holiday business without many opportunities for rest, but it went pretty well, all things considered. I seem to be paying for that now though, haven't been able to sleep much and today is pretty rough pain wise. We have decided to stay home and take it easy and try to get the house cleaned up. I'm also hoping to get some rest in this afternoon. Feel like crawling out my skin today and the pain is really uncomfortable. It'd be nice to just be able to wish it away.

Christmas was really wonderful, we had a great time and the kids were so much fun. I think the only thing better than experiencing Christmas as a kid is watching your own kids experience it. My sisters, brother, brother in law, and the little nephew man are all here so that rocks. Its been so good having us all here together and seeing them again. They're here through New Year's-one sister's birthday is on New Year's Eve, WOOHOOO!, so we'll all celebrate together.

I think this may now qualify as the most boring blog EVER, it may be worth it for the couple people reading to go just go ahead and re-read from the beginning, those are a bit more exciting.They are filled with a lot of yarn as well, and the reason I originally started this blog-as evidenced by the title.

Wednesday, December 10, 2008

MRIs, Blood tests-check

Yesterday was an afternoon full of MRIs. Four in all is what I was told. They asked if I would be able to lay that long and I replied its one of the things I CAN do right now. Thankfully no massive twitches or shake episodes. I did have one neck twitch, but thankfully it was during one of the shorter ones so I didn't have to go through two long ones twice. I was a little nervous beforehand, even though I know it won't hurt I am not a fan of closed in spaces. I was a bit panicky in the beginning but basically laid there and prayed and soon was relaxed.

Then it was off to get a ton of blood drawn for a lot of tests I don't know the names of or remember. This is why I have doctors.

Today I visit my rheumatologist-who I have not seen since before the big ER trip. I sort of assumed the info would be sent to him, but realized he may not even know I have a diagnosis. I've been seeing the genius nephrologist since he diagnosed me in the ER so there's been no need to go to the rheum.

Tomorrow afternoon I am back at the genius nephrologist, hopefully for some answers.

Thankfully the rest is doing me well and I am moving more easily STILL. Let's hope it keeps up.

It's now officially one week since the Mozzy Mania and I am glad to be doing better and not bent over and shuffling. I may or may not still mumble from time to time.

Friday, December 05, 2008


I saw the neurologist today, thankfully I did not have to get a spinal tap. I was very nervous about this. One of those was more than enough for me.

I did the usual rundown of strength, etc. tests. Pushing in all directions with hands, arms, feet, and legs; walking (hobbling) around; flipping my hand up and down on my other hand; touching my nose; and all that fun stuff. This was very disheartening for me as the last time I remember doing these things was in 2006 and I have really deteriorated since then. Not at all quick, much less strength, and a lot more give. Responding takes longer as well. I guess I knew these things, but seeing the difference in this way really got to me.

The short of it is that she added a few tests on to what my genius doctor had already ordered and we will see how the MRI and tests go before any decisions are made. She recommended I try physical therapy for the walking, but I will wait until after the tests for this as well. Also recommended I start seeing my rheum again. Haven't seen him since before the big ER visit.

The husband came with and did pretty well, I was glad to have him there and even happier that he didn't need to drive me straight home after a spinal. Whew. I know it is hard for him to see me go through this and that it scares him as well but he is trying not to let it show. I love him for it, but hope he talks to someone if not to me. It's a lot of worry and burden to hang on to. I love that he is there for me. I love that he makes me laugh in the middle of all this stuff and that he takes such good care of our kids and I don't have to worry about that.

Met up with a friend for lunch, good to catch up with her as I have missed her in my health-imposed solitude.

Still walking like Ozzy-or Mozzy as one of my daughters has named me (Mom + Ozzy) and wearing out really quickly. Putting in some hours today and relieved that I am able to do my own work instead of needing someone to do it for me.

Thursday, December 04, 2008

And we're off

tomorrow neurologist visit, blood tests and head & spine MRI on Tuesday, and back to the doctor onThursday. Woohooo!

In the meantime, still shuffling along and trying to rest more.

Wednesday, December 03, 2008

One of the worst days in awhile

As far as mobility is concerned. The joint pain/locking up I've been having seems to have moved into my back, as of yesterday. I was having some trouble but was able to get more rest and only worked about four hours until I came home and collapsed on the couch.

Today I woke with nausea and dizziness again. Got the kids off to school and laid down and eventually made some muffins. I went in a little after eleven. Just taking a shower, getting dressed, and into the car had me sweating and weak and breathing as if I'd run a marathon. (I so wish I could run again but I am not sure I ever will.)

I worked through the day, trying to limit my activity as I knew it would be a long one with Advent services starting tonight. I was determined to make it to the service-and through it.

My slow awkward walking soon became an Ozzy like slightly bent over shuffle. I prayed, did a devotional from the chronic pain/illness site I'd found and prayed some more. Worked more. Had a meeting at two and realized I was once again having trouble getting the right words to come out and hold a thread of conversation. Thankfully this only lasted an hour or so. I was also having trouble making my body work as it should, hands weren't cooperating but it wasn't too bad.

I have to admit, usually when I am like this I go home to rest and hide. I don't like being this way in front of other people. I'm uncomfortable with their reactions and of appearing so off. I know everyone is concerned and caring and means well, but it is even more difficult for me to reassure them when I am going through that and having all the pain I've been in. I very much wanted to make it to the Advent Service, I really, really wanted to be there and was determined to get through it. I worked up the energy and tried to throw off the nervousness and shuffled on out for the meal before the service. I made it through.

Until the tremors started and I quickly realized this was turning into one of the jerky/shaky episodes. If I could've hurried I would have to hide. Basically my body and limbs will just twitch and jerk and shake and I have little to no control over it. It's also pretty painful when I am hurting like I am. Plus it looks very freaky and scares people and I just want to hide and be away from everyone when it happens. I made it to my office and wham off we went. I ended up crying in the middle from frustration and pain. Eventually a friend and my husband came in to check on me and I decided to go home. After the jerk episodes everything clenches up and I often have a harder time moving my body, especially my left side. I ended up shuffling out very slowly to the door which I could not open. My husband needed to open it, then help me into the car because I couldn't lift my legs to step up. I then needed help into my house.

I lost it at the door of the church. This is so frustrating and humiliating. I'm trying to handle it with strength and grace, but at 33 I should be able to make it through a day of work and a church service. I shouldn't be walking like an arthritic elderly person and need the door opened for me and be helped into the car and the house.

I see my doctor tomorrow. Hopefully he'll get me straightened out and the side effects aren't too bad.