Hellooooooooooooo

Once again, I've been absent for half the year. At least anyone who's read my blog knows this happens much more often over the past few years-if any of those people ever even check back. I wouldn't blame them if they don't.

I go so long I forget my login information. It's downright sad.

So, where am I? Health issues still plague me, the latest round is high blood pressure which has laid me out for about two weeks. It seems to be under control again, I hope. I'm on a new NSAID which really seems to be helping with the arthritis and I'm hopeful I may be able to live a life more like a 34 year old and less like a 74 year old. A 74 year old with arthritis, as one of my grandmothers proves-there are many 70 and 80 year olds far more fit and mobile than myself!

I'm home with a night off, the boys have gone to Okoboji and my girls are at a sleepover. Going to the lake is a blessing for my husband and boy does he need it dealing with me, the kids, the house, and the job on his "regular time." The benefit is I get a bit of a break as well.

Things have been fairly rough on the health side of it, but hopefully I'll continue to see improvement, I'm really looking forward to it.

As a fun aside, we discovered a stray cat mama and five kittens in our shed. The kids want to keep all of them, the husband and I (and our two house cats) are not in agreement. But they are pretty darn cute. Now, I've got to figure out what to do with them all.

Some people...

Just back from the school run where I got dirty looks and glares for where I dropped my youngest off at primary school. As with most schools, drop off and pick up times at our schools are crazy and the school tries to minimize the insanity by designating certain doors for certain groups. We are fortunate to have a few drive-through routes at our primary school. The side is used for Kindergarten-2nd, with a sort of separate area for K and the front of the building is designated for preschool, preK, and handicapped & special needs as it is closer to walk to and has lots of handicapped parking. I've been given permission to use it since the girls began going to school there for preschool.

During my healthier times I use the side drop-off, otherwise I use the front, especially for the youngest who is a bit of a lollygagger and easily distracted. This way I can pull up and drop him off and am able to see him walk to the door and into the school a few feet away. It also saves me having to get out and walk him up. If I do need to walk him in, it saves me a lot of walking and exertion that is better spent elsewhere and often is pretty painful for me.

Today I was in the lane dropping Col off and there were more than a few other parents using it due to cold and snow who would normally use the side lane so it was congested and backed up, but this is pretty normal. As I sat waiting to be able to pull out I had two women (other moms) walk out of the building look at the congestion, talk to each other and then begin glaring at various people, myself included. I happened to be straight in the line of fire, and I really do understand their frustration, especially when you have little children or special needs children and value that lane. I know that what to some may seem a small convenience it can be a HUGE help to others and save some steps and energy.

What gets me is how judgemental others can be, so focused on their own needs that they fail to realize that even though others may not appear to have limitations they just might. Unless you see me walking, and sometimes even when you do, you'd not really know I have a disease. You wouldn't see that I am not a healthy, able person. I get a lot of looks like the ones today.

I generally try to not use shortcuts, as if to prove I am able and that I can do it. I end up wasting energy and pushing myself far beyond my limits and half the time, its because of those looks. I don't want to be seen as using something others may need more than me. But, I do need those things and I end up hurting myself by pushing too far. I use the handicapped stall in the bathroom, I use the shorter lane at the school, I park as closely as possibly at stores and its not because I don't care that others may need it. It's because I need it, even if I don't appear to.

I know it won't stop and I also know I've found myself doing the same to others and I'd like to kick myself for it. How many times have I sat in judgement of someone using the same things and feeling as if I had more of a right to it? How many times have I been frustrated with someone for appearing to be healthy and able and using things they "shouldn't." I am more attuned to it, but if even those of us who are not able do it how can we expect those without an understanding of our limitations to do any differently?

Wow. April was the last time I posted?

Oh my. The absent blogger again returns. Le sigh.

Home desktop is online again, yay! I also have a fancy iPhone as well, so hopefully I will return a tad more often. Sheesh, even once a month would be good at this point.

Here's what's happened since April: family, work, church, family, work, church. I also have a new niece (Joe's brother & his girlfriend) and now my sister is expecting in June. YAY! We had everyone back for the holidays which was wonderful and now are settling into the post-holiday crash. My illness has been up and down, with a lot of downs. I have a new rheumatologist who I really like but have only seen once, I go back on the 11th. I am hopeful that he will be able to help me live to the fullest and not just try to treat the pain. For the first time ever I kept track of all the books I read in 2009. I made it to 198, including all the books of the Bible. It was really cool to see all I have read and thanks to some other voracious readers I am now on Goodreads.com (link to come when I am less lazy) and loving tracking the books I've read there. ESPECIALLY because more than a few times I've gotten books only to get a few pages in and realize I've already read them. I had hoped to make it to 200, since I was so close, but spent time with family instead. Next year maybe.

This year I am going to try Project365, although if my blog posting is any indication I might make it a month. Hoping to go through the year though!!!

It's good to be back. Aaaaaah.

Happy Holidays, Happy New Year, Merry Christmas and peace and love to you all. May you receive and recognize God's blessings throughout the year!!!!

Here I am again!

Obviously by my last posts things have been up and down for me and much of my energy is spent with the kids and the husband and at work, the rest is for things like showering and getting dressed and doing laundry. Otherwise I sleep or read or try to rest. Good times, good times.

I guess one of the better offshoots of my illness is that I've been forced to seriously focus on the important things and have to let the rest go. At this point it's family and work, and friends when I can. Good, but frustrating because I miss my friends! Also, I miss walking normally and my brain. Sigh lol. Actually the brain is still functioning at a pretty good rate and I am really, really, really, really thankful for that.

The home computers have been acting up so that limits the online time. The laptop is refusing to charge and the wireless doesn't like to pick up the signal from the room we call "my cave" where I do a lot of my convalescing. I've had to confront my internet addiction and not by choice *sob*

In better and more exciting news I FINALLY FOUND MY IPOD!!!! We had packed it away for the move and then it was not surfacing during the unpacking I've done. (Note that there is quite a bit of unpacking still to do, even though its been MONTHS AND MONTHS since we've moved. We're also those kind of people who still had unpacked boxes from the move previous to this one which had been 8 years before.)

So right now I am updating the Ipod and REALLY excited about it. Yeeeeehoooooooooo!!!!! I have missed you my little friend.

There goes the laptop charging again, that's it for now.

It's April 4th

and snow is in our forecast. Yesterday the kids were running around without even a jacket on. A few minutes ago a bird was chirping away outside.

Snow?

Thanks to a friend I was able to get everything done for work and now I have gotten to hole up in my house in comfy jammies all day. I finished reading the The Shack and I loved it.

The kids occasionally break out in fights and then I put them to work. If they have time to fight, they have time to clean. Ha Ha! On a funnier note, one of my kids is crawling/sneaking through the living room and thinks I don't know it. He just popped up and said "I'm funny." That he is.

The blogs have been few and far between for me, I seem to do more reading of others than posting on my own. Many times it is because I use much of my brain power at work and am too tired to try to get it revved up again. Others it is because my brain, hands, or body have decided not to work that day.

Today is a pain day. Not so long ago I prayed to God to allow my brain to continue to function, to be able to think and remember and retain that. I told God that the body could go but to allow my brain to remain as unaffected as possible. I was reminded of that prayer today as I am burdened with an overwhelming amount of pain. I had some inkling it was on the way yesterday when my skin hurt. I went to cross my legs and the contact stung. My clothes were unbearable and when I got home I couldn't find comfort in sitting or laying.

The night was rough and restless and it has continued into the day. I just hurt. A lot. This cold I have seems worse again today and this is a day where I am tested in trying to retain my humor and patience. I spent the day trying to rest and was able to sleep for a bit. I needed to get to work, to my kids, get things ready for the last of the midweek services tonight. The thought of just sitting up overwhelmed me. Walking to the bathroom would be painful as my legs tried to bend and the bottoms of my feet would ache as I stepped. I knew the water would hurt hitting my skin in the shower. Just this would leave me breathing heavy as if I had had a workout.

I'd still need to get dressed and into the car and off to the church. Once there would come more and just the physical part was intimidating.

Then my phone rang and it was my friend Laura. She was feeding my kids dinner and watching them until and through service and my husband could get there. I cried.

She admonished me to call when I needed help and to remember to keep people (friends) updated on how I was doing so they could help.

It's hard to accept that I am limited. All the things I want to write about this seem trite or cliched and nothing can capture that frustration adequately. I don't like not being able to do even simple things, I don't like not doing things I feel I should be doing. I don't like not being there when I am expected to be. I don't like needing help.

In all this I reminded of how fortunate I am to have God and friends and family who care and are here and want to help. This disease would be a lot worse for all of us-me, the kids, and the husband-without all of them.

post from 1-21-09

I wrote the following on 1-21-09, but blogger was down for maintenance and I am finally getting around to adding it. :)

So, the brain is not working well again today. I am losing words and even forgetting what I am saying mid-sentence. *poof* it's just gone. It's hard to concentrate on anything or form thoughts, or really read anything. Gets frustrating.

I very much again wish I had the digital camera as yesterday I received a really cool gift. It's our last name, crocheted with crochet thread and it is beautiful. My friend had her sister make it and then she set it on black velvet and framed it. I was really overwhelmed by it, it is gorgeous and I was very touched by the gift. Can't wait to put it up on the wall in our newish house.

I am still around, still working with the yarn, and hoping to be able to think a little better tomorrow.

You know what?

I am actually still crocheting and knitting. You probably can't tell because I seem to barely post about it anymore.

I can't post pictures as the digital camera is suddenly not turning on. Need to contact Kodak as that sucker is just barely a year old. I was pretty bummed to be camera-less through the holidays.

So, I am slowly working on ponchos for the girls out of some super soft variegated yarn one purple, one pink, knitted. I was going to do the two panel style where you sew them together, but I might do the asymmetrical where you do one big rectangle and sew it up. I had made one of the purple panels for Abbie's but it is WAY WAY too small so I'll have to frog it and start over. I moved on and started a large rectangle for Arenne's as I didn't have the heart to immediately frog the purple.

Its slow going as my hands are not always wanting to work as they should, but I am plugging along. I am determined to keep going with the yarn fun for as long as I possibly can, and now I've decided I can call it therapy for the small motor skills. Tee Hee.

I've done a few dishcloths and now that its cold I can get back to the blanket for my sister. So, there it is folks, the yarn is still abundant in the Blue house (much to Mr. Blue's chagrin) and I am plodding along with it.

welcome to 2009

Sometimes the fact that we are almost 10 years in the 2000's really surprises me. I'm sure part of it is not feeling as if I can possibly be the age I am.

The holidays were really fun for us at the Blue house, it was wonderful having all of my siblings home and hanging with the little nephew man who is so absolutely adorable and hilarious and awesome. Seeing my kids be so caring and fun with him was really great and I was very sad to leave them last night. It'd be nice if we all lived near each other, but for now we have to make the most of the time we're together-which we generally do.

I also took a good amount of down time from work, I didn't realize how much I needed it, but it's been very good for me. Nice spending the time with my family and children and just having fun with each other. Also had tons of my mom's delicious cooking which is always welcome and much enjoyed.

Then to today, where I forgot I had a doctor's appt. I completely and absolutely forgot. The husband had the car at work, I was home with the kids and I remembered late this afternoon that I was supposed to go to the neurologist at 11:30 today. This is not good and I now will have to call to see when they can get me in, and I hate missing appts and wasting people's time.

My body has been moving fairly decently with only some mild hiccups. I did have a twitch/jerk episode in front of my sisters' which they haven't really seen before, but they handled it well and just went right on with the conversation. I love that they know me well enough to do this for me, and that they didn't need me to explain or anything. My mind has not been working as well though-as evidenced by the missed doctor's appt. It's just not as sharp, I am losing words more frequently and unable to remember details. Almost as if I am in a fog.

I usually play some online word games or puzzle games to sort of exercise my brain, I haven't really researched whether this has been researched to be helpful but I am pretty sure I read somewhere that it was. It seems to help at least. But, I don't have the drive to even try them right now, its too much work.

I have had days where I could almost forget I have a disease. It is really, really freeing and I am happy to have them. It was nice to not be constantly reminded that I am a *gasp* sick person. I was around family who didn't ask me all the time how I was, who didn't expect me to explain anything, and just accepted me how I was. I had good days physically. I am trying to keep these things at the top of the list and be thankful for them instead of getting sucked down by the bad.

So far, a pretty good start to 2009. No Ozzy shuffling, no inability to walk, not as much pain. Hoorah!

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.

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.

Neurologist-Check.

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.

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.

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.

Living with PAN-the lighter side

I am having very painful joints and some issues with walking and my brain doesn't always want to work the way it should (more than usual!). I've done two steroid boosts and plaquenil and it doesn't seem to be doing the trick, but I will find out the next course of action on the 4th of Dec. (I was told to prepare to go on the cytoxin again, we'll see.)

Anyhow, I thought I would share a couple of the lighter moments I've had recently.

I am 33 and close with my grandma who is in her 80's, we often attend church together and when we do I usually give her a hand when we walk to the altar to attend communion. There are two steps to walk up and she will use a rail and hold onto my hand for balance. Lately I have not been walking so well, but didn't think we'd have any trouble.

We walk up the steps together and I realize we are a tad wobbly. After receiving communion-where I had knelt down and had some trouble getting back up-we went to go back down and I whispered to her to let me get down the steps first and then I would help her. So I go down, then help her and then we started laughing and she said it was like the blind leading the blind. LOL So true.

The second would've been embarrassing except the lady involved was very nice and had a good sense of humor. I was being checked in for my regular blood draws and the woman at the desk was asking all the regular questions of if my info is still the same, etc. Then she asked what my symptoms were.

I completely drew a blank and could not think of even one of my symptoms.

(WHAT?!?! LOLI live with this everyday.) I tried to buy myself time,"Well, there are so many..." and "I have polyarteritis nodosa" (I could think of THAT but not the symptoms?!)

Still nothing. Not a word, nothing. This has happened before but never with something so obvious and with so many choices.

Then she supplied, "joint pain" YES! That's one.

I then explained that I have some memory and recall issues and this seemed to be one of those times. She said that it must make conversations interesting but that I could probably have fun with that too.

It's Official, not doing well

I saw my doctor this past week and I am officially still in this flare. The PAN is attacking my joints and I am hurting a ton, having some other issues, and really exhausted. There is also a wicked respiratory thing going through our house, I've been put on a couple medicines to attempt to kick it out and then back on the steroids. I have to go back for tests, they are adding a couple more, in a couple weeks and then see the dr again in 4. He wanted to see me in 3 weeks, but its Thanksgiving and he had no openings. He told me to prepare myself to go back on the cytoxan, but hopefully the steroids will do the trick. (Not holding my breath as they didn't when we tried them a couple months ago for this along with the plaquenil, but still holding a teeny tiny bit of hope.)

So things are not great, but at least my kidneys are still working okay and at this point it does not appear to be affecting any other organs. I am really not ready to go back on the chemo drugs, its been just past 6 months since I came off them. I had hoped I would get a nice reprieve, but no such luck.

In good news we had an awesome Halloween in our new to us house and an even awesomer night when Obama was elected!! And the Hawkeyes beat Penn State today!!!

In other news, that blasted risograph I work with is again NOT WORKING. I had a repair man out on Monday and it decided on Wednesday it was not going to load any new ink and once again none of my troubleshooting efforts are working. Even though I have now gained a lot of risograph troubleshooting knowledge. It loves me, it loves me not...

WOOOOOHOOOOOOOO!!!!!!!

This is so amazing and I am so happy and crying and excited!!!! WOOOHOOO!!!!!!!!

AMAZING!!!!!!!!!! WE DID IT!!!!!

Go Vote. Now.

If you have any interest in your healthcare, vote Obama, now. I personally have voted for him for far more than that and it feels fantastic to vote for a candidate I respect and really, really like.

go here

It's a contest and a good thing and you must click and go here!

just checking in

Wanted to update, still not doing that great but am a little better. Hurting a lot still, but maintaining, I see my doctor on Tues.-after I go vote for Obama/Biden of course.