Monday, October 31, 2011

Serendipity

Again, with the craziness.  Yes, life's still hectic for us. I keep telling myself things will slow down once the holidays are over. Hmmmm.... Wonder if that will actually happen. Anyway, there are so many little tidbits to share that I might as well get to it.

* The 5 mg melatonin does not seem to be helping me get a better night's sleep.  I am thinking of bumping it up to 10 mg to see if that helps me any more.

 * One, recent, evening we went and picked out pumpkins at the local pumpkin place.  We always have fun going there! Afterwards we visited Halloween in the Dark at Hershey Park.  It's tons of fun.  They even have a trick-or-treat area for the kids to wander through and get treats from volunteers. My daughter came home full of candy and exhausted from all the fun she had. It was a great time!









 











* Another of our recent evenings was devoted to carving jack-o-lanterns with my husband and L.






















* Of course we were outside raking leaves up quite a bit as well. L had a great time jumping in the piles.  She even enjoyed raking them up this year. Unfortunately, we have not been able to play in them as much as we would like because it's rained so much this fall. The weather seems more appropriate for the spring, with milder temps and lots and lots of rain!


















* T showed up one night with roses for me and carnations for L.  Isn't that so sweet??














* We  also went trick-or-treating.  L dressed up as Daphne from Scooby Doo.   Remember Scooby Doo? Well it's baaaack...again! For some reason our township always has trick-or-treating the Thursday before Halloween.  Not sure why, dumb rule.  The night we went was cold and drizzle-y.  So we had to revise L's costume and make her "Daphne from Scooby Doo on a ski trip!" It worked she filled two and a half pumpkin buckets with candy!


















* A rain storm turned into a winter storm when it met up with our cold temps this weekend.  We got at least four or five inches. It was surreal seeing all the snow covering leaf laden trees. It was also dangerous.  The branches were too heavy from the dense snow and all the wet leaves that it caused so many power outages this weekend.  I had intended on uploading pics and posting a blog this weekend.  Instead we dealt with 30 hours without power. Not fun! At first I felt awful because I couldn't let my daughter go play in the snow.  If I had gone out there and let my body temp drop there would have been no way for me to bring it back up without a heater, hot chocolate, and a steaming shower. However, I think we made up for her not being able to play outside. The snow storm became serendipity.  We did not enjoy going without power but we made memories anyway. 30 hours without electricity brought us... Some neat pictures, silly songs, games, extra time with both sets of grandparents, fun times with friends, breakfast out, a sleepover at Nana and Opa's, stories (both read and told), hot chocolate, snuggling under blankets, yummy pizza at Roberto's, and making new memories for the next generation at a local theater that I've going to since I was a kid (Who can beat six dollar movies tickets for an adult?) ! While I would have liked to have my electric on, this weekend was still pretty magical. And since it was so cold out the ice cream never even melted. Thank you God for all of it!







Monday, October 24, 2011

ZZZZZzzzzz....

I have been having sleep problems lately.  I fall asleep perfectly fine.  It's the staying asleep part that my body is having issues with. I wake up all night long to toss and turn.  So my rheumy. is having me try a melatonin supplement.  This is supposed to mimic my natural melatonin production in my body and help me sleep.  I've taken it for two nights now.  I haven't noticed any difference as of yet.  I am hoping that maybe it will help after I've been on it for awhile.  Hope.  It's a big word in a chronic chic's vocabulary!

Wednesday, October 19, 2011

Busyness

I just realized that I have been fairly lazy about my blog posting recently.  And I'd like to say that I have been insanely busy. I honestly thought that once my daughter was in school that things would slow down for me. I mean my daughter is in school all day after all! So I assumed that I'd be sitting at home trying to find things to do until I found a part time job to fill my time. Well... I was wrong. So very very wrong!

I have been volunteering at L's school at least once a week if not more. I do a lot of copying, cutting, and folding work for the teachers. And then I run all over the school delivering it all to them.  When that's not happening there always seems to be something that needs done for L's class or there's an activity in the evenings or on the weekends. Of course there's all the typical mundane errands that need done on a weekly basis as well. Among all of this busyness I am also looking for a part time job and going on interviews.

For a normal person this could become rather daunting. Throw in in achy or painful joins from arthritis and random sinus headaches from allergies, and well you've got a recipe for exhaustion. I am exhausted. As well as anxious about my future job. If I feel as if I'm running myself crazy now I am afraid to think about how it will be while I am working part time as well.

I am also anxious about actually being able to find the right job for me. Because of my physical limitations I need to find a desk job. The job can only be certain hours to allow for me to get my daughter on and off the bus. It is also important that I can have off when my daughter does during the school year. Seems like a rather huge list of needs for a prospective job! I honestly am skeptical as to whether I will actually be able to find a job like that. It was suggested to me that I apply for disability to help. But I almost feel as if I would be abusing the system at this point since I can still work a desk job.  And there are people out there who need disability much more then I do.  Fortunately, my husband and I are in a comfortable enough situation that we don't actually need me to have a job.  That allows for some flexibility.  We've proven that we can live on one income for the last five years after all.

My husband is hoping that there's actually a job out there for me, with all the filled requirements, that will fall in my lap. Me? I'm stressing out. Stressing out about me actually finding the job and about me surviving the errands, volunteering, babysitting, L's activities, time out with friends, and working. I guess this is all another part of trying to be Super Mom with an auto immune disease. Stay tuned to see what happens next. Duhn duhn duuuuuuhhhhhhnnnnnn!

Friday, October 14, 2011

A Visit With Dr. A.

I had a visit with my fantastic rheumatologist, Dr. A. today. (I just love her and have absolutely no idea what I would do if she were to ever leave the practice!) I was pleased with my visit and found out some interesting tidbits of information.

The best piece of news that I received today was that my rheumy. has decided to let me discontinue use of the Methotrexate for the next four to six weeks. Since I didn't feel that there has been any significant improvement in my arthritis when I upped my pills from five to seven at a time. We are hoping that while I am off of the medication that it will help us ascertain whether or not it actually helped.  And it will also let us figure out if my recent upswing in arthritic pain is due to the damp and chillier weather that we've been experiencing or if it's because the Methotrexate was helping and I just didn't realize it. If it turns out that the medicine has actually been helping me then we will be turning to a new form of MTX in the hopes that I will experience less side effects. Which would mean that I would be injecting myself weekly. --->Insert scared faces here<--- I am nervous about the thought of injecting myself every week.  If, however, we would find out that the medicine was not helping me then that will pretty much mean that I should expect my arthritis to get worse as it gets colder. Which will in turn cause us to explore other medicines for the pain.

I also found out today that there is a possibility that I have Rheumatoid Arthritis as well as Sjogren's.  (It is very common for people with Sjogren's to also have RA.) My blood work for RA came back negative last time it was done. Which I am told, is semi-normal since only about 60% of RA patients actually have positive test results, according to Dr. A. It's rather disappointing to me that there aren't tests out there, across the board, that will allow a doctor to be 100% sure about a patient's auto immune diagnosis.  But, as my rheumy. explained to me, the medicines that most doctors use to treat Sjogren's are all borrowed from the treatments that are used for RA. Which pretty much means that all my bases are covered anyway.

The last bit of information that we talked about was my Vitamin D levels. I had been reading articles that suggested that keeping your vitamin d at a "normal level" can be beneficial to Sjogren's patients. So throughout last winter I was consistent with taking it on a daily basis since I knew there was no way that I was getting enough vitamin d from the sun with all the overcast days we deal with during PA winters. Today Dr. A suggested that I take even more to keep my vitamin d levels even higher due to all the study results that have been coming out about vitamin d and it's benefits to arthritis.  Here is a brief blurb from Johns Hopkins about vitamin d and arthritis...


"Many researchers now believe that the "sunshine vitamin" may one day play a key role in preventing the development and progression of arthritis. Researchers, including scientists at Johns Hopkins under the direction of Uzma Haque, M.D., Assistant Professor of Medicine in the Department of Medicine, Division of Rheumatology at Johns Hopkins, have been looking at the effect of vitamin D on rheumatoid arthritis and osteoarthritis and the data are quite suggestive. Vitamin D is proving to be a most promising area for arthritis research."


To read more of the article look here.  After discussing this we are hoping that in boosting my vitamin d levels that it will significantly decrease my arthritis pain.  So I had my blood drawn and we'll find out in a week how low my levels are and decide from there what dosage of vitamin d that I need to be on.

After such a rough week with my Sjogren's it was nice to have a positive appointment with my rheumatologist. I'm weirdly excited now to see what my blood work shows as far as my vitamin d levels go.

Wednesday, October 12, 2011

Today

Today I am being bogged down by "should be's" and "why bother's".  I "should be" cleaning the tub because it looks disgusting but my knees hurt way too much to actually be on them long enough to clean the tub. I "should be" exercising but I have absolutely no energy. I "should be" staying on my couch today but I just too much that needs to be done....not tomorrow....today. Yes, I am aware of the conflicting nature of those "should be's"!

My biggest conflict is that I "should be" taking my Methotrexate every week but "why bother"? Is it worth loosing a day every week to flu-like symptoms and weakness only to have the medicine "maybe" help me? Let's put it this way, it's not helping enough for me to actually notice a difference so "why bother"?

I'm sitting in the allergist office, while I write this, waiting out my half hour observation time following my allergy shots. And I'm wondering if these shots work enough for me to have to continue with them every month into the distant future? I'm not sure, "so why bother"? Despite the thoughts, I am totally willing to admit that this whole "why bother" attitude could be attributed to the miserable rainy day that we are having or the wearying aches and pains that I dealing with today.

My mind drifts to the thought that my Sjogren's Syndrome is a progressive disease. Which in, health terms, means that my disease will continually evolve, plateau, and worsen in varying degrees, over the years. That is not a thought that a person can concentrate on long before your positivity starts to sour. Anyway, since Sjs is progressive that pretty much means that I will be on some form of medicine or other for the rest of my life. Which brings me back around to my attitude..."Why bother" with medicine at all?

Please forgive my rambling gloomy-gloomy blog post this morning. It's just that I feel the need to be brutally honest with you in sharing my ups and downs of this disease. (Even if the down is an ugly attitude.) It's in the name of educating the general public.  Because it's astounding how many people have never even heard of an auto immune disease let alone what it actually does to someone's body. But today is just one day in my Sjs journey and I am remembering that tomorrow is another day filled with the promise of God's love and the possibility of sunshine!

Tuesday, October 11, 2011

Yesterday

L had off school yesterday.  So we spent the morning with friends at a great little farmers market. They set up a green house for kids to romp in complete with sandboxes of corn, hay mazes, a giant hay slide, and lot of animals to ooh and ahh over. The morning was filled with lots of laughter and fun.

In the afternoon L and I pretty much ran around like two crazy people. Which ended up making me tired and her cranky. The excerpt from below perfectly describes yesterday evening...


"Time out for seven minutes?! How could you set it for seven minutes?! Don't you know I'm only five? Five years old! I can't believe you set it for seven minutes when that's past my age!!"


It was not the greatest evening with my sweet adorable loving angst-y girlie. Hoping a good night's sleep helped.  Otherwise, I fear for her teacher!

Wednesday, October 5, 2011

Highlights

It seems that I have become busier now that my daughter is in school all day.  Which is not something that I thought would happen.  So far some of the highlights have been....

*My girlie got pushed during her soccer game and she fell into the metal goal post. She ended up with a whopper of a goonie on her head! She actually wanted to stay in the game and was upset to be benched by her coach.  She saved her tears til she was buried in my arms.  My proud Mommy moment came when she went back into the game at the end. We took her home and spoiled her while we iced her down with her favorite princess ice pack. With all the attention she got she may have considered it worth it!


*I have found a new internet addiction!  It's called Pinterest.  It love love LOVE the DIY section.  They have so so many crafts that I am just dying to try.  The first two crafts I tried didn't turn out too bad. What do you think? I cannot wait to make some of the things for friend's birthday gifts.


*I've been doing a lot of volunteering at my daughter's school and a lot of visiting with friends this week.  The former has made me crazy tired. The latter has been a breath of fresh air.


*L has been a drawing maniac this week.  I just love to see it. The thing is, however, that she adores drawing on our little post-it notes. There is not a post-it bunch in the house that doesn't have some kind of doodle on it from her.  Note to self....Buy stock in post-its!


*Smell the air! I don't know where you are but here in Hershey the air smells like fall.  That means L's and my favorite season of the year. We have been counting the days til we could decorate for Halloween! There are cobwebs absolutely covering our ceiling fan in the dining room.  The house smells like vanilla or cranberry orange candles.  And I swear L's pumpkin buckets are having babies when we're not looking!

















Happy Fall Everyone!!