The Heart of Life is Good

I can’t believe how quickly this week has flown by!  Looking back it seemed so busy but sitting here thinking about it I felt like I got nothing accomplished!  It was Ed’s first week back at work after his six week medical leave for his knee surgery.  It’s been an adjustment getting back to our old routine – it was so nice having him home and just being able to spend time with him.  For those that have ever worked in retail you know what I’m talking about.  His logs about 50-55 hours a week including weekends & holidays – it can be frustrating… not only for him but for me. So the last six weeks we took advantage of our time together while he recuperated.  Ironically his leave was also helpful to me both mentally & physically…  I wasn’t as stressed (believe it or not) and just felt more at ease, which in the long run has helped me to feel better about everything in general.  He was able to go to appointments with me and just be a big support with everything that was going on. 

After speaking with my Neurologist on Monday (he was back from vacation), he informed me that he would like me to begin seeing a physical therapist for my neck, upper back.  He explained that the muscles surrounding my cervical spine area & neck are so tight that they are compressing my nerves which is causing the tingling/numbness in my hands & fingers.  He believes that if those muscles get loose and function how they are supposed to, the numbness will go away.  Needless to say I am thrilled with this news!  He also said that it should help my postures which, for those who know me, know I have terrible posture so that is an added benefit J. 

On another positive note, I was able to sleep through the night both Wednesday night and last night.  I was so thrilled – it was the first in over 1.5 months so it was long overdue and greatly needed!  My fatigue hasn’t let up at all and I still have to nap everyday after work before I can be functional for the night.  If I don’t get one in, I’m useless by 7pm.  Today has been rough because we attended the EAA Air Venture show yesterday so I was on my feet in the sun all day yesterday.  Even with SPF 50 reapplied every two hours, a hat & sunglasses I still managed to get a minor rash and sunburn – arg!  I shudder when I think of the pain I would’ve been in had I not had it on!  It was my first time attending this event and I must say it was pretty cool!  I have never seen so many airplanes in my life!  We saw old war planes, got to tour the U.S. Customs planes & National Guard refueling planes, Coast Guard helicopters, etc. We also toured the EAA Museum which was really interesting as well.  I’m definitely paying for it today but it was worth it. 

Ed & I both work this weekend so a majority of it will be spent catching up on rest and hopefully finalizing our Dells trip!  Not much else to report on the health front as I don’t see my rheumatologist until August 23.  So I’m just counting the days and hoping to get in a bit sooner - but seeing as though it’s already August on Monday (where does the time go???) I’m just going day by day and relishing in the fact that I have energy and am grateful for every day that I wake up pain free (or at least tolerable) and am able to get through the day.  So needless to say life is good!

Till next time…   

Another Week Begins

After a difficult week, I was so ready for the weekend to be here.  It was also Ed’s last weekend before he went back to work – he had knee surgery six weeks ago –so we wanted to take full advantage of the time.  Once I got home from work on Friday we wasted no time in letting the weekend begin.  We started out at Painted Parrott for a Fish Fry (our favorite) and then headed to Falls Fest in Menomonee Falls, WI where we danced & sang (and sweat) the night away to the Sweet Tarts band.  They put on such a fun show – my body was pretty sore from dancing but it was so much fun so it was worth it!  Saturday I slept in until 9:30am and it felt great!  Then we headed to mall where I was on a mission to find a sun hat for when we go to the EAA show this week.  This excursion actually took pretty much out of me so I was happy to be able to get in a much needed nap before we headed to the Zoo for my dad’s work picnic. 

This was quite an experience to say the least.  The event began at 6pm and the Zoo was open just for the employee’s & their families.  We had free reign of the Zoo (so to speak) until 10pm and access to the shows and exhibits.  There were also vendors set up where we were able to sample various snacks, meals & desserts throughout the night.  It was so much fun!  Ed & I were pleasantly surprised and we’re looking forward to next year!  Sunday we went and saw Captain America (which was great!) and cannot WAIT until The Avengers comes out next May.  Even though I was still pretty tired, I managed to get through the movie and grocery shopping before I needed to take another nap!  Even though I felt worse as the afternoon went on, I sucked it up and headed to the gym where I managed to get through a 30-minute cardio workout and then cooled off in the pool. 

The rest of the night I was on the couch relaxing and getting ready for the week reflecting on what was another fantastic weekend!  I can’t believe we are entering the last week of July – Summer is almost over L  There is still so much that I want to do before school starts – I hope I can get it all in!

Hope everyone’s week is off to a good start!

Till next time…

Sorry For the Delay

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 2^nd 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 23^rd 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…

Day By Day

Where to start?  As I mentioned Monday, I went to see my PCP due to some symptoms I had been having.  I had an exam and then I was off to get some blood work done and have a urine test.  Pretty painless, however, when I got home my doctor called me and decided to order a glucose test based on what he saw from my lab results (I was surprised by the quick turnaround!).  My doctor wants to test me for insulin resistance.  This is a condition in which your body produces insulin but doesn’t use it properly. So, I was told to fast and I would have my glucose test in the morning. 

For someone who loves to eat (especially sweets – just ask Ed J) it was rough not being able to eat after 8pm.  Since my neurologist appointment was at 8:30am (more on that later), I had to wait until after to go get my test.  By 9:15am, I was ready to gnaw my arm off.  Since I had never had a glucose test done before I didn’t know what it all entailed.  Unfortunately, when I showed up at the lab I was informed that it was a two hour test, one in which I couldn’t consume any food or drink.  Luckily, they had a stockpile of People magazines for me to catch up on Hollywood’s greatest to pass the time.  For those of you who have never had a test done, it’s not that bad.  Basically, they take a baseline blood draw to compare with the others you take throughout the test.  Then, I had five minutes to consume the worst tasting drink I have ever consumed in my life (this really was the worst part).  Imagine warm orange syrup laced with sugar.  Not something I would make part of my daily routine but once was do-able.  It did make me feel quite nauseous for the rest of the day but luckily it eventually subsided.  After I consumed that I had to go back to the waiting room and return every 30 minutes for two hours.  While it wasn’t the most pleasant experience, again, it was do-able.  I was nervous because it always seems to be a struggle to find a good vein for one blood draw, but this was five!  All in all, there was a bit of trouble but they did something right because I didn’t even have a bruise this morning (which is extremely rare)! 

Tuesday was also the day of my appointment with my neurologist.  As I have mentioned before, I was extremely nervous for this appointment because so far my PCP has been unable to explain why I’m having the numbness & tingling.  After an exam, blood work and MRI, he still didn’t have any answers so that is why I was referred to a neurologist.  As I went into the exam room, the nurse was extremely nice and made me feel at ease.  She went over some initial questions, took my weight, height and vitals.  I was then left alone in the room to wait for the doctor. 

This is the second time that I have seen this neurologist; the first time was last year when I have my nerve conduction test.  He is extremely thorough and asked me every single question under the sun!  Then he gave me an exam and reflex test & also ordered some blood work to look at what my ANA levels are.  ANA, or antinuclear antibodies, are substances produced by the immune system that attack the body's own tissues.  This was one of the tests initially run that helped to determine my diagnosis of lupus.  My neurologist wanted an updated reading on my current levels since he didn’t have one in his records.  He also ordered me to have another MRI, this time it was going to be of my cervical area.  This will be my second one in less than a month but I’m thankful for insurance because this stuff is starting to add up!  I will be having it on Friday morning.

At the conclusion of my appointment, he began discussing the things that he would be looking for and hopefully ruling out.  Based on my physical exam those things included Thoracic Outlet Syndrome, Transverse Myelitis, & musculoskeletal issues.  He also wants to rule out any lupus involvement which will show up on the MRI scan.

So that’s been the last two days – hectic with going back and forth but hoping it’s the start of getting some relief & answers.  Ed also lifted my sprits by surprising me with flowers when I got home – very sweet.  I have been feeling better and have been able to go walking both yesterday and Monday.  I think a lot of it has to do with the fact that I decided to just take it day by day and not try to push myself.  So instead of planning out how my week is going to be, I just base my day and my activities on how I feel when I wake up.  I believe its better for my mindset otherwise I get disappointed and feel defeated. 

So overall, good news!  Taking things day by day is definitely a lot easier and doesn’t stress me out so much!  Hoping I’m able to keep it up!

Till next time…        

Always Wear Sunscreen

Overall, It was a good weekend for me (I consider anytime in which I can be active w/o a nap a good day).  Friday night was spent with my family for my mom’s birthday.  We had steaks on the grill and played games and I got to hang out my favorite munchkins.  They always brighten my spirits, which is what I have needed.  Saturday was spent in Madison on a spur of the moment trip.  The days that aren’t planned always seem to turn out the best.  I was able to see one of my dear friends from college, Megan, and catch up with her.  That AND I ate the best BLT sandwich in my life - it had avacado... it was delish and I'm still having dreams about it (shout out to Tipsy Cow in Madison)! I was also hoping to see my cousin Shannon & her family but that didn’t work out since we spent the better part of an hour trying to get unlost (I don’t even know if that’s a word) – guess I will just have to make another trip ;).  I was pooped out by the time we got home but I was able to make it until 10:30 pm.  Sunday started out alright but as the day wore on, I began feeling worse & worse.  The rash on my forehead & cheeks seems to be getting better & better by the day.  Thanks to makeup, it is barely visible.  We bought new sunscreen and made sure it contained zinc oxide.  I was very surprised to learn that many of the sunscreens out there DO NOT contain it, even though it is the only mineral that provides complete UVB/UVA protection & has anti-inflammatory properties.  [Speaking of sunscreen, I’ve included a fun song below that sends a good message and always makes me feel better after hearing it].  After we got our weekly shopping done, I was pretty much a couch potato the rest of the night and was in bed by 8:45pm.

Also, over the weekend, I came across these articles and wanted to share them with you.  After I read this one I was so inspired and wanted to contact him to see if I could meet up with him!  J Wishful thinking I know but what a great goal to accomplish and for a terrific cause no less. There is a link to his blog within the article if you’d like to follow his journey.  

When I came across this article I wanted to pass it along because there are a lot of good resources listed as well as coping strategies.  I thought it might be a helpful tool that people could bookmark and reference in the future.

  

It’s a big week of appointments for me.  Today I’m off to see my PCP (primary care physician) to get some tests run for some symptoms I’ve been having.  I called them last week regarding frequent urination, bubbles in my urine, back pain, low grade fever and general malaise and they wanted to see me.  I was hoping I wasn’t going to have to see him but alas...  They will be running some tests which I’m hopeful will all turn out normal.  This is the one thing about this illness – a majority of the things (at least in my case) are all precautionary measures.  This morning, my temperature was 99.2, which is down from the weekend so I’m hoping that is a good sign of things to come.  Tomorrow I meet with my neurologist for my numbness, tingling and loss of feeling.  Hoping it’s successful and that I’m able to start getting some answers.  When I know, you’ll know.

Till next time…

What Gets YOU Through???

Friday is finally here – Amen!  Even though I was at work for only two days, the week moved as slow as molasses.  I’ve had lots of things on my mind this past week – my upcoming semester at school, anxiety about my appointment next week & stressing about money ($60/week just in co-pays!!!) just to name a few.  But these are every day stresses & anxieties that the average person experiences as well, so my question is – what gets you through?

For me it’s always been music.  I still wish I was blessed with some musical talent – I’ve always wanted to learn how to play the guitar & there was a time when I could sing decently (HS choir); although now-a-days I keep it to singing in the car…  by myself!  Awhile back when I was in the hospital (for an issue unrelated to lupus) I had a music therapy class that gave me great insight as to how to express & manage my feelings.  I believe at times there are really no words to truly express/explain how you feel and can be better described by a song.  As I was listening to my iPod today, I came across a great song that is a great reminder that no matter how bad life gets you just have to keep your head up and remember that you aren’t alone.

Who do you swim for???

I am a firm believer that we are never given more than we can handle.  Even during the times in which I think it can’t get any worse (even thought it usually does) I come to realize, in the end, just how strong I am.  For every experience, there is something to be learned and that is one thing about life that I truly embrace.  In every situation, fear of the unknown is what can break us, but how we choose to respond is what can make all the difference.  So with that I leave you with this song…  Hope everyone has a great weekend!

“The hope is we have so much to feel good about”

Till next time…

Back To Reality

After having five days off (in a row) it was definitely hard to wake up to an alarm this morning!  It was so nice to have a break and be surrounded by family & friends these last few days.  Overall, I must say it was more good than bad in terms of feeling like absolute garbage but I still struggled.  I ran a low-grade fever all weekend (101.4), was pretty stiff & achy, tired (that’s a given) and developed a rash from the sun (even with sunscreen).  While all these things suck, I’ve become accustomed to them and just adjust accordingly.  I was happy that we were still able to do a lot of things that we had planned to do.  We were able to attend a friend’s cookout, see the US Bank fireworks on the 3^rd, see the Tosa fireworks on the 4^th, and go to the Brewer game.  I did have to work on Sunday (my second job) but my boss Tammy was good about letting me leave early so I was able to meet Ed & his family down at the fireworks.  I was so happy that I was able to make it – even though they seem to go on forever they seem to get more amazing every year!  Aside from all of this, there was a lot of veggin’ & relaxing.  Ed was great and helped out a lot by cooking the meals and forcing me to rest & sleep.  As I mentioned before, he’s had to put up with a lot of mood swings & bad days and just takes everything in stride.  So grateful for him. 

Yesterday I had another appointment with my chiropractor.  I did the electrical muscle stimulation therapy again since it brought me so much relief the last time.  It seems to be doing the trick for my tailbone pain.  I have also been working on improving my posture and how I sleep (on my back which seems to be nearly impossible!) to see if that helps me to feel any better as well.  Seems silly I know, but sometimes little changes can make a big difference.  The numbness & tingling are still there and now I’m starting to notice some twitching in my legs and very specific muscle cramping in my calves and above my knees.  So I’ll add this to my journal that I’ve been keeping to speak to the neurologist about.  Speaking of which… my appointment is on Tuesday!!!  I’m getting very anxious about it but so happy that the time is finally here.  Waiting over a month to get in hasn’t been fun!   

It seems strange that tomorrow will be Friday already – I feel like I just got back.  I’m already looking forward to the weekend though.  Today I woke up feeling pretty awful but remind myself that I could be much worse off – I think about all the people that are dealing with such greater challenges and it really puts things back into perspective.  Anytime I want to have a pity party I think of a childhood acquaintance whose daughter was just diagnosed with leukemia (age 10) and is currently undergoing chemo or all the people who are on a waiting list to receive a working organ.  Mostly though I think of all the people, who on a daily basis, don’t have the necessary means to care for themselves and are struggling with an illness.  Then I look at my situation… it ain’t that bad (and yes, I know, ain’t isn’t a word!)

Till next time…

Red, White But Certainly Not Blue

Overall this has been a good week, I’ve felt good more than I’ve felt bad and I’m looking forward to an extended holiday weekend to catch up on sleep & rest.  About a week ago, I began seeing my chiropractor (Dr. Scott) again to determine if my nerve pain is being cause by a pinched nerve or something of that nature.  The last time I visited him was in 2003 so it’s been awhile.  At this point, I’m exhausting all possibilities before I see the neurologist on July 12^th.  Mostly, I’m looking for some relief but I also want to walk into the neurologist’s office armed with information on what has worked and what hasn’t.  My biggest concern going into the appointment is that I’m not going to be taken seriously and that he will tell me its all in my head.  With the MRI not really showing any signs of anything other than mild stenosis (as well as my body aging) it’s somewhat frustrating.  Aside from the numbness & tingling, my lower back pain has gotten quite better.   For close to eight months I had been having beyond extreme pain in my tailbone area – my only relief came from lying down.  Talk about a LITERAL pain in my a**.  I had a hard time sitting, walking, standing.  It was awful (especially because I sit all day for my job as well as in class) but Dr. Scott has been working his magic and the pain has been reduced significantly through adjustments and electrical muscle stimulation therapy. This therapy helps by sending electrical currents deep into the tissue and reducing inflammation and tiring out my muscles so they stop spasming.  Although Dr. Scott hasn’t been able to pinpoint what exactly is wrong, he has concluded that my lower back pain is separate from the nerve pain since the numbness, tingling and pain are still present and has advised me to keep my appointment with the neurologist.  While that was a bit discouraging, (since I was hoping that it would be a simple fix) not having the lower back pain has been the greatest relief right now.  I felt so great after my appointment Wednesday that I was able to run three WHOLE miles!  Granted I had to stop a few times to “wake up” my legs & feet but I finished and it felt great!  I’m taking it day by day and fingers crossed that it continues through the long weekend since we have so much going on!   

The Fourth of July is my favorite time of the year - there’s just something about this time of year that puts a big smile on my face!  Not to mention it’s a time to reflect on and celebrate our Independence.  I’m looking forward to spending time with my family & friends sporting red, white & blue, attending parades, eating lots of BBQ,  playing games and of course, FIREWORKS!   I hope you all have a wonderful & safe 4^th of July holiday.

Until next time…