Hope and Fear

Every day I end the blog with a line about hope. I mean every line I write...but I also fear that the hopeful statement won't come true...today's hope is laced with more fear then most.  I am hoping that the weekend will go smoothly.  My parents and I are going to be surprising my sister and James at his birthday party and then staying for the next day's trip to Epcot...it was a last minute decision, of course, based on so many factor's, like how JB was feeling and how I was feeling.  My sister's boyfriend is helping us keep this all a secret for everyone so we can surprise them...it should be a lot of fun.  SHOULD being the operative word...I always feel like the other shoe is going drop...even though I am hopeful...sigh...

HOPE HOPE HOPE...if anyone reads this, please hope with me!! 

Bad Day Turned GREAT!

Well, my day started with having a horrible urodynamic test, which is basically a barbaric test, but is extremely useful in giving information about how the bladder functions.  It showed that mine does not function properly...finally, a test to prove that things do not work right because of the autonomic dysfunction (kind of like the small bowel dysmotility...my stomach works too quickly, but small bowel is too slow, then large intestine tends to kick into high gear at times causing spasms..) Well, my bladder seems to kick things into high gear as also, causing spasms in my urethra when it is supposed to relax. I also have some pelvic floor dysfunction, but instead of being too relaxed, mine spasms too much (I know, backwards). The doctor will call me next week with a plan and to fully discuss the results.

That was the BAD part of the day...the GREAT part of my day came when my Mom decided to bring up going up to surprise my sister and James for the weekend...YEA!  James is FINALLY not sick, and since it is his birthday, and they are going to have his party on Saturday, and then go to Epcot on Sunday, we thought this was the perfect opportunity!  I emailed Dave to let him in on the surprise...I hope he gets the email in time and calls or emails me back!!  We don't even know where the party is so we can show up...oops...

I HOPE HOPE HOPE we can all stay well the whole time to enjoy it!!!

Terrible Horrible No Good Very Bad Day

Yesterday was one of those days you just want to END!  I went to the dentist in the afternoon and he told me that I had peritonitis on my bottom gums (which I suspected) and that I would need a deep cleaning and scaling, plus I had two cavities, one of which might need a root canal...none of which is covered by my insurance so it will cost a FORTUNE!  Also, it will all require numbing...which, at this point I am allergic to...so I have to go to an allergist to see whether I am allergic to a preservative in the shot (so I can get a preservative free one) or whether I have to pay for a hospital stay and get general anesthesia (I REALLY hope NOT!!). 

I also got a call back from my rheumatologist.  He told me that lymphocyte count was down to 648 (my last one was 900)...of course I do have a cold, and this could be because of a virus, but he was concerned, so I am too. He is still waiting for all my other tests to come back, especially considering I am running fevers every day.

I see the uro/gyn today...HOPE HOPE HOPE for some good news...I don't know if I can deal with anymore bad... 

Teeth...and Freaking Out

Ok...so my gums look a mess!  There are deep pockets below my bottom teeth and the top gums are receding all of sudden.  I made an appointment with a dentist tomorrow to have it looked at and see what they can do.  I looked on the web and saw that it could just require a deep cleaning and some medication to heal the gums...I really hope that is all!  I am scared though...my body has NOT been handing stress of different medications or different ANYTHING for that matter.  I go into autonomic shock very easily.  I faint, my throat closes, my whole body burns and stings, I get fevers and infections and sores.  It's like I have an autoimmune disease that is just one big flare up right now, probably from lowering my prednisone and catching a cold at the same time, plus stopping my birth control pill a few weeks ago (well a month ago now, I guess). 

I HOPE HOPE HOPE tomorrow goes well...he will just be looking and prescribing an antibiotic if he is going to do work..HOPE HOPE HOPE my teeth will be ok!!!

Autonomic Allergic Reaction

How weird is my body...for the second time, when we ate at an Italian restaurant in Weston, I ate pasta basillica (pasta with basil tomato sauce) and I had an allergic-type autonomic reaction.  The skin on my chest started to itch in the restaurant right after the meal before we left and my Mom asked if I was alright, because she said my eyes started look glassy.  I then started to pass out, for the first time in weeks.  My Mom pulled into a parking lot and waited until I came out of it and then I look 3 benedryl because I was so incredibly stingy.  Once we got home I also took a little bit more neurontin because I was still feeling off....my throat was starting to spasm.  The neurontin helped right away..the benedryl helped the rest of the way, although now my head feels all swimmy. 

I HOPE HOPE HOPE I can avoid more reactions...wish I knew why my allergies all have autonomic reactions attached to them...

Cold...

I have a cold...ugh...my nephew got me sick.  No one is surprised, least of all me.  All I have to do is be around someone that is sick and I catch it. and he was in the house, touching the furniture, hugging me, not that I am complaining...mind you!  I HOPE HOPE HOPE this doesn't undermine my recovery from lowering my prednisone dose to 12.5...I HOPE HOPE HOPE my autonomic symptoms don't come flaring back up...I HOPE HOPE HOPE this cold goes away quickly!

B-12

So why wouldn't my hematologist tell me that my B-12 was low back in November??  That is my question! My rheumatologist told me today when I saw him since he got a copy of the report, and this is the first visit I had with him since then.  This could DEFINITELY explain many of my symptoms that have not gotten better with the exclusion of my birth control pill.  Something so simple...something so easily fixed...something overlooked because it wasn't DRAMATICALLY low, but low enough.  I will start the supplement tomorrow...on a dose lower then what is normally given because my system is so sensative.  We will recheck the level in a month to make sure it is going up.  Thankfully I have a doctor that cares!!

HOPE HOPE HOPE this supplement works and does not make me sick!!!

Adults Living at Home

Adults living at home with their parents NEED to have boundaries...I wish my parents understoond that.  I wish my Mom understood that.  I think that is hard for parents...they seem to think of their adult children as just children, still needing to be told what to do, what not to do...my Mom still tries to tell me what to spend MY money on, clothes I should wear, when I feel I will be able to drive (like I would EVER endanger anyone...).  It seems to always be an arguement when I am well...she says she wants to be healthy, to be independent, but then when I start to assert my independence, she asserts her parental control...I AM 30!!  I deserve the respect of adult.  I have NEVER had trouble with money, I have NEVER endangered anyone, or done anything reckless...this needs to stop.  I need to set some boundaries.  I am getting healthier...I HOPE HOPE HOPE this gets easier!!

Waiting...

It's day 3 of my drop to 12.5 of prednisone and I am waiting for the side effects to kick in and hit me like a ton of bricks like it usually does.  I don't know what to think at this point...every other time I have lowered my dose of prednisone, even by the smallest amount, I have been hit with AWFUL side effects like migraine headaches, horrible muscle spasms, vomiting, throat spasms, etc...this time, NOTHING.  I am HOPE HOPE HOPING...but don't know what to think at the same time...kind of waiting for the other shoe to drop...HOPE HOPE HOPE is all I can do...

Mayo Clinic

The way the healthcare industry works, this should not come as a surprise to me...the Mayo Clinic in MN has denied me care based on the fact that I have no insurance.  Since I cannot pay, I cannot be treated.  Not that I do not have NEED to be treated...but that I have no MONEY.  This is why there are so many bills in the house and congress trying to be passed...this why the democrats and the republicans fight like they do over who has the right to control people's lives when it comes to health care...well I can tell you this much, if this keeps up, people are not going to get the health care they need, and that just isn't right.  Too many people are getting left out in the cold.  Too many people are getting hurt by this CURRENT situation...WE NEED CHANGE!!!

HOPE HOPE HOPE our president can get things CHANGED!!!

Full Weekend...Now Dropping

We had a great weekend with everyone here!  It was great that my sister and crew were staying a hotel, though, because JB ended up getting a cold...which, honestly scares me. I did not kiss all over him, and I wash my hands quite often...but still, having him in the house, with me lowering my prednisone now, is not great timing...but when are things ever good timing?!?  The weekend was still wonderful!!  The kids were GREAT!!!  They get along incredibly well...Belle is a sweet girl, a bit dramatic, but she is 10, so that makes sense...I can relate to being like that at her age.  She enjoys playing with JB and doesn't mind sharing games and even stopped playing the Wii so JB would go outside with my Mom and do sidewalk chalk.  They all ended up having a wonderful time because the chalk was 3-D (VERY cool!)  The lunch on Sunday was really good, too!  The kids were very patient during the extremely long lunch time.  I was surprised by how smoothly everything went this weekend!

Today everyone went home in the morning after spending some  time at our house.  It is always sad to see them leave...They probably won't be back for a month or 2. 

I did lower my prednisone this morning..down to 12.5 mg from 15 mg of prednisone.  I HOPE HOPE HOPE this goes more smoothly then the last drop!!!

Great Day!

Yesterday was a great day!  I didn't feel fantastic at first, because of my stomach, but I managed to get it under control with zofran and levsin sublingual tablets.  My sister and crew came in around 11 am and we went to lunch at Too Jays where I had just hummus (which was more then enough), but it looked like I was eating normally which didn't bother anyone.  I looked normal, I looked good...the first thing my sister's boyfriend said was that I looked good...the last time he saw me I was about 6 or 7 lbs heavier and SICK!  At Too Jays the waiters sang Happy Birthday to my nephew and that just made his whole day!!  He was such a good boy at the restaurant, even though it took a long time to get seated, and an even longer time to get our food.  Then the girls went shopping and the boys went home to play rock band on the Wii.  We all had a great time and it was a perfect way to break up the afternoon!

By the time the girls came home from shopping (which was a GREAT success because "Belle" got a new outfit with shoes and "MR" got a sweater, plus she bought "David" a pair of fuzzy pj pants) we were ready to pick up my grandparents for dinner and the Valentine's Day/birthday party for "JB".  While we were waiting to eat, the kids were playing Wii, Belle was playing the Wii Fit Plus and I was sitting on the couch watching when JB came up and cuddled next to me on the couch, laying his head on me and I wrapped my arms around him and just hugged onto him.  He hasn't done this in a while...I think because I was sick, and he had to be careful around me...I MELTED...I absolutely love my nephew to pieces and was so happy that he felt comfortable with me again!!

By dinner time we were all hungry and my Mom had outdone herself again!  There was SO much food and it was all delicious! JB was very excited about his chewbacka cake and it looked GREAT...I bet it tasted great too..but I was good and did not even take a bite, because I was so worried about my stomach...after dinner we opened presents, and the kids and my sister were completely surprised by their gifts (tickets to Disney for the family for 4 days/4 parks) and of course all the other little presents we got them!  The looks on their faces were priceless!! 

By the time they left, we were all exhausted, but completely HAPPY!  HOPE HOPE HOPE this feeling can last forever!!!

Busy Weekend Ahead

This is the first weekend I can remember that my sister, and her "crew" (which includes my WONDERFUL nephew, my sister's boyfriend,  and his daughter) are coming down where I feel pretty darn good.  I mean, I still have my stomach issues, but they are no big deal and don't stop me from doing anything fun.  I just have to make sure I eat lightly and have some zofran with me, just in case I get nauseous.  We are planning on celebrating my nephew's 5th birthday and Valentine's Day...FUN!  I think I wrote about all this in another blog...so I will spare you the details again...especially because I'm sure I will be writing about it again after the fact! 

For now...I am just happy...HOPE HOPE HOPE everything goes well!!

Good idea

During the conference call for the Lupus Foundation, we were discussing the possibility of what kind of group I would start to run again, since the Dania group was canceled.  Well, I told them I was still planning on working with Marisa on line with the different support groups, especially since there can be more then one meeting per month, and so many people can be on the site at one time.  One topic that came up as filling an important need would be adolescent...and since I am certified as an ESE teacher, specializing in middle school/adolescent age, it seemed like a perfect fit for me to be the facilitator for that meeting.

I HOPE HOPE HOPE this works out...

The Nonconfrontational Approach

Yesterday I treated my parents to lunch at the Cheesecake Factory as their Valentine's Day gift.  I was excited to do this because I knew we always enjoyed our lunch there.  I was also excited because I was very much in the mood for my favorite dish, Evelyn's Favorite Pasta. I order this dish everytime I go here, and I order it in exactly the same way...with no oil sauce (so the pasta itself is dry, but the vegetables are sauteed in oil, so it's not completely bland).  I never had an issue before...this time, the dish came to the table soaked in oil not once, but twice.  Both times, the manager came to the table and asked how he could change the dish, and both times I calmly explained that I just wanted the pasta dry, not to be tossed in oil. The third time, it was dry, but the eggplant in the dish was horribly undercooked, to the point of being like rubber, completely inedible. It was bad enough that my food was not prepared correctly, but my Mom's food was not as it should be either...her salmon (which she usually gets, as well), was drier and thinner then usual.  Not their best showing. We were offered nothing in the restaurant for my botched dish...nor did I make a fuss...

When I came home, I went to the Cheesecake Factory website and left a comment.  I thought that, at most, I would get an email saying they were sorry for the inconvience and maybe a coupon for a cheesecake slice. I got much more then that today. I was shocked when this afternoon the GM of the Cheesecake Factory called me to apologize for the problems that occured and vowed to have a meeting with his staff to ensure this would not happen again.  He also told me to ask for him personally so this problem does not happen again for me.  He said that he will send me a gift certificate for free cheesecake and coffee in the mail to entice me back to the store.  I was truly impressed!!

I HOPE HOPE HOPE that this shows people that sometimes the nonconfronational way of dealing with things can get things accomplished without anyone getting hurt.

The Go Ahead

I got the "go ahead" from my rheumatologist to lower my prednisone from 15 mg to 12.5 mg.  YEA!  I will lower my dose on Monday (today is Tuesday...so I still have some time to feel good).  I am so excited to have a great weekend with my family in town...this is the first time I am actually excited about them coming down, not really worried about how I will feel.  I know that on Monday, things will start to change, and I will go through the withdrawals, but I have a feeling that it won't be as bad. 

HOPE HOPE HOPE...and this time, it's not fraught with worry...what a relief to be myself again...

This Week

I think this week will be a good one...I just have a feeling.  I haven't had a feeling like this in quite a while.  Usually I am so worried about what will happen day by day minute by minute.  It's really amazing.  I am actually looking forward to the coming weekend, when my sister, her boyfriend, his daughter, and my nephew are coming down.  We are going to celebrate James's 5th birthday and Valentine's Day.  It will be so much fun with me feeling well, and no one stressing out over me being sick!! 

I can't even believe how clear headed I feel all time now...no burning in my head, no burning skin, nothing!  The hormones seem to be calming down...my own hormones are working.  How nice that something works...although no cycle yet...not that I mind.  HOPE HOPE HOPE this continues!!

In the Moment

I know that I have been writing about the day before, but since I have been feeling well, I have been feeling more "in the moment".  "In the moment" feelings make me want to write about today...feel today...not dwell on the past.  I guess that is a good thing!  Living in the moment is like the way the animal world works...it is so much simpler...makes life so much more enjoyable!  The way should be lived! 

Today I went to visit my cousin Danny's grave with my parents.  We go about once every month-2 months, depending on how I feel (if I am sick or not).  I know my Mom wishes we could go every month...so I do try.  Then we went to a WONDERFUL farmer's market.  We bought SO much fresh produce and fresh pasta...we also bought some pastry for my grandfather (that looked incredibly good!!).  When we got home I went to check my email and nearly got a virus on my Mom's computer...NOT GOOD!!  I spent about 3 hrs on the phone with tech support cleaning her computer out and making sure nothing was infected.  Luckily I did not download anything and nothing was corrupted.  The virus software still had to be uninstalled and reinstalled...2 times...ugh!  It is now running a full scan...this should take a while! 

All in all it has been a good day!  It has been a full week off the pill, and a full week of feeling pretty good...I am sensing a theme...I HOPE HOPE HOPE this keeps up!!

Figured it Out?

So after almost a week of feeling ok, maybe stopping the pill was the answer??  I HOPE HOPE HOPE so!!!  I've been out and about, and feeling ok...still no cycle...YEA!!!  Of course this means I will have to lower my prednisone soon...HOPE HOPE HOPE this keeps up!!!

Holy Wild PMS Batman...

WOW...I hadn't felt mood swings like that since I was a teenager...I wasn't depressed, because THAT I have definitely felt in the last few years...and I didn't feel angry, because THAT I felt pop up over and over again too thanks to the prednisone...this was, well, plain old PMS anxiety and weird kind of wired nerves/hormones raging...I felt like Mrs. Slocome on "Are You Being Served", saying, "I'm just in the mood!"!!  I kept telling my Mom that and laughing, although it was more a nervous kind of laugh, almost like I was explaining why I was acting kind of crazy. 

We went to see Dr. Salgado, my neurologist, which turned out to be one of the times I REALLY felt like saying "I'm just in the mood"!! He claims that I might NOT be having syncope!!  UMMM...then what am I doing when I lose consciousness???  I'm sure as hell not faking it!!  GRRR...I thought I was past these jerks thinking I was questioning me! I guess not...so my parents and I are looking into getting a heart rate monitor like the ones worn by people working out. That's show him  ;-)

I HAD to meditate when I came home!!  I hadn't done that in a long time, but I found one of my cd's and my cd-man and turned my light off and just zoned out for about 15 minutes.  It was VERY resorative!!  I felt 100% better when I was done!  I MUST remember to do that more often!!  I used a natural sleep inducement cd, which uses sounds of the ocean to match your breathing with...SO nice and peaceful!

HOPE HOPE HOPE tomorrow is a little calmer, but at least I know what to do if the nerves come back!

Sunshine

I am reading a great book called "Sunshine" by Robin McKinley.  It is about supernatural beings living amongst humans.  A human becomes involved with a vampire and it is very well written. 

I just don't have much to say today...even about yesterday, where I did feel ok and even went out a bit...I am just tired and kind of PMSing...so HOPE HOPE HOPE I feel better tomorrow so I can write about it...

Full Day...Feeling Good...No "Pill"

Wow...I spent the whole day, from 9am-3pm out and about with my Mom (we even got the meet my Dad for lunch at Cheesecake Factory for lunch for a nice surprise).  It was a nice day...I felt pretty good, although tired by the time we came home, which is not unexpected considering I haven't done anything like that in such a long time!!  I could have done more if I had more medications with me.  I was NOT expecting to be out for SO long!!

I have a VERY strong feeling that I am feeling so good this week (normally my 3rd week of the "pill pack") because I am NO LONGER on the "pill".  I am not sure why I have to tell the doctors what is wrong with me in order for them to listen and MAYBE agree with me...most of them don't agree...or even if they DO agree, don't know what to do about it.  It is rather frustrating that it took THIS long for anyone to figure out that my pill was the cause of my flare ups.  Oh well...I will keep HOPE HOPE HOPING that tomorrow will be as good and that my body really is adjusting to "normal" hormones!!

Lazy Day, Clearer Head

I finally realized that my head is clearer.  I lowered my Topomax a couple of weeks ago, back to 200 mg and my head feels so much more like myself.  I am remembering my medication schedule, names of people and dates...I am not NEARLY as depressed...things don't seem as hopeless, even when I am sick.  It is about time!

My Mom and I didn't do anything yesterday because it was raining ALL DAY...which was kind of nice.  I have the MRI of my brain tomorrow...HOPE HOPE HOPE things go well...

Sigh...Another Weekend Down

Well, the whole weekend was shot thanks to me...my Mom really wanted to go out on Sunday, to visit my cousin Danny at the cemetery and then to go look for birthday gifts for James and could do NONE of that because I woke up sick.  I know she says not to feel guilty about that, it's not like I have any control over it, and yet...I do.  She may not realize it, but she MAKES me feel guilty about it...she gets into these funks when we can't do things she wants, or expects us to be able to do, and then is in a BAD mood for a while, until she adjusts to the day we DO have to live with.  She does get over it, but it takes a little while.  I feel awful when that happens.  I wish I could just suck it up and do what was expected, but I had SUCH a stomach ache and ended up having "D" that if I went on with the plans, I would have had the problem in the car...that would have NOT been pretty!!  I knew it was going to happen...I just don't think SHE realized it...when she did, her mood changed for the better.

I also fainted 2 or 3 times...I am SO tired of this! I stopped the "pill"...I seriously HOPE HOPE HOPE this is what helps!!  I don't know how much more of this I can take!  My body is going crazy...my mind does not seem so far behind anymore...although it is better now that I am back down to 200mg of Topomax...250mg of that and I was ready to jump out the window! HOPE HOPE HOPE for a better tomorrow!!!