Here comes the sun.....

It was a BEAUTIFUL day yesterday.  Sitting out in a rose garden at our "remote" location for buyback was SO peaceful.  At one point I looked up and saw a hawk, soaring overhead.  It looked so beautiful, majestic and free as it flew.  Of course- the way my mind is working I thought to myself; "Wow, that is just beautiful but I wonder what HE is thinking."  That comes from the realization that image is not everything and that we never know what is going on in the lives of the people that we think are so "together" or "have it all".  I thank my sisters for that. 

One downside to yesterday is that I am still sun sensitive thanks to the Methotrexate.  This morning my face and forearms are pretty pink.  Needless to say- before I got dressed this morning I slathered those areas with SPF 30! 

The reason that I enjoy doing remotes is that we have so many less students there that I can take plenty of time and really educate the students on the buyback process.  Educating the students on the process is really key.  Buyback is hard because we get two extremes.  We get the kids who are thrilled to sell back their books and love every dime they get.  Then we get the students who feel that it doesn't matter how much you are giving them- you are ripping them off.  They are rude, loud and never satisfied.  It's very hard.  It's hard to stay polite when you are being accused of "screwing them" or are being berated.  It's also hard to reconcile because they bought this product, used it for four months and now get to sell it back.  What else could you take back to the store after four months of use and get money?  Any other type of retail establishment would laugh in your face.  That's the biggest challenge of this odd worlds of this particular type of retail.  That said, when I can take the time to talk to them and teach them how it works and the lightbulb goes off- it is very worthwhile. 

So back out I go today.  Back to my garden.  Back to spending time with the kids and getting snippets of my other work done in the process.  It's going to be 78 and sunny today- that will just add to the enjoyment of being out doing  one of the things that I enjoy most in my job. 

Getting through the craziness one step at a time.

Things are getting crazy around here!  It's the time of year when we have so many things going on that I never feel like I am going to catch up.  We are doing buyback right now- which is when we buy the kids books back at the end of the year.  We have our first summer session starting in just under two weeks, we have web orders to process, books to get on the shelves and commencement to prep for.  It's also the end of the fiscal year which means paperwork coming out my ears.    Then there are the every day demands of things that are thrown at you last minute and stuff that just "pops up". 

On a personal side- I have my first Arthritis Walk for this season down with my dad on Mother's Day weekend- oh- and Mother's Day which I haven't shopped for.  I have to go for a chest X-ray so we can get the okay for the Orencia, a mammogram (yay that-not), meet with the PT/OT on the same day as commencement AND we have baseball tickets that night to support the "Dog Day at the Park".  Plus there is the beginning of Orencia infusions coming up.  My goal- to be caught up completely by Memorial Day and then use the summer to get into a groove. 

What all of this means for me is long hours and a definite need to focus.  As one of those people who is a "planner" that means I am living and dying by my calendar and my to-do lists.  It means I take a notebook everywhere to make notes as I think of them and I take work with me when I go to appointments for while I am waiting and such.  The only way I will get to where I need to be is to take small bites of each project as I have time.  For example- today I can't be in the store as I will be at a "remote" location doing buyback- but when I don't have a line (like when the finals are running) I will work on catching up with some paperwork.  It might mean schlepping more stuff with me but it must be done.  If there is anything that I can work on in a couple of minutes- it will be with me.  It also means that I will be doing a lot of "take a breath and focus" exercises to keep my head in the game. 

It's going to be a challenge- but the light is at the end of the tunnel- I just need to stay on course and I feel confident that I have the tools to do just that. 

Page 2?

This is my update to my new chapter.   I had my appointment at my Rheumy's on Friday.  As I expected- Methotrexate is no longer in my regimine and the folic acid and Enbrel are gone as well.  She kept me on my tramadol, gave me back my Flexeril and added prednisone for the time being.  This is as a holdover until I get started on Orencia infusions. 

About Orencia- it has it's good and bad points.  The good points are that there are supposedly very little side effects.  A little nausea and stuff on the day/day after are to be expected but no major effects and it doesn't touch the liver.  Once I get started and get my little push- it will be once a month- that will be nice!  Also- no MTX and no Enbrel means I no longer have to inject myself in the stomach twice a week.  I have one dose of Enbrel left and that will be the end of that.  On the negative side- in order to get dosed up- I have to have an infusion every two weeks for three visits before we go to a month- and it is VERY Spendy!  Because it is done in- office it is processed through my medical insurance rather than my prescription insurance.  That means that (for me) it is a 20% co-pay (or 200-300 dollars) per infusion.  YIKES!  I am just incredibly grateful that I have insurance.  I cannot imagine trying to do this without.  I am also grateful that Bristol- Myers has a program that will help with the co-pay for the first six months if I qualify.  I am not counting on it but I am sure that it is boon for people who do.  It also is a long appointment.  I have been told that I will be in the chair about two hours per visit- and until I know how I handle the drug- I have scheduled it for Friday afternoons.  What a way to start the weekend-lol!  I just hope that they let me nap in the chair! 

On another note- I have been issued my handicap parking plate and have an appointment on the 10th with a PT/OT for mobility aids.  This is really, really hard for me.  I have been fighting and fighting this disease.  I have made it a part of my life and I have learned to live well with- or in spite of my RA and Fibro.  By putting that plate on our cars- I am allowing myself to be labeled "disabled".  That takes the wind right out of my sails.  The best way I can describe it is feeling defeated.  I don't need the close spaces all of the time and most of the time I park in the middle or far end of the lot so I can get a little extra exercise in.   The reason for doing this now is that my last trip brought me a real setback and my job now requires travel three or so times a year.  More than anything though is that as I am being taken off a proven drug and switching up to something we don't know- we have to expect the worst and hope for the best.  If I slide back to my pre-MTX days- I will be ready to kiss that handicap space when I park. 

So that's where we are.  I am desperately trying to wrap my head around the "labeling" issue and am feeling pretty positive-mixed with a little terror about the med switch.  If any of you have experience with Orencia- I would love to hear about it!

Is this a new chapter?

Well- we know that my biopsy result showed Methotrexate Hepatotoxicity.  That tells me (cause I am WICKED perceptive) that I will be losing my Methotrexate.  To be brutally honest- this morning I am just as nervous as I was for my biopsy last week.  I am seeing my rheumatologist early this afternoon and she will tell me where we can go from here.  I have been through all of the major DMARDS- so what is left?  I have searched and searched and I haven't found anything that I would expect- and I like knowing what to expect. 

I guess this part is becoming a page turner- and I will turn that page around noon.   

The Road to Recovery

I have discovered that I am no longer a spring chicken.  I mean- I knew that I am growing older, I knew that my body is most definitely older but have always been the person who rarely gets sick and when I do, I ride it out; I don't let it get the best of me. 

The biopsy last Friday knocked me for a loop.  When I got home I felt like I had been kicked by a Derby horse-literally- in my ribs and shoulder.  Saturday was much of the same.  Sunday I got up and was moving around and trying to be "normal" but I was so tired that my biggest desire was for sleep.  Yesterday- I went back to work.  I made it to 1:30pm.  By then I was so tired that I was nauseated.  I came home, put the dogs out, while they were outside I changed into my pajamas and then the three of us crawled up into our bed and slept until Jim got home at quarter to 5.  The bruises are still there (it was a tough time getting my bloodwork and IV set) and they are tender; the shoulder throbs with any use; but that is minor compared to how bone tired I have been. 

I think that I was so focused on the biopsy itself that the whole nerve bundle to the shoulder thing took me by surprise and I let it throw me. I was expecting to hurt in the area of my liver. I didn't know where they would go in (I was guessing the front) but expected that to hurt. When I got out of the procedure and they wanted me to lay on my side but I couldn't get my shoulder into a position that didn't hurt- it made me want to cry. I became whiney and that really bothered me because that is NOT me.  



When I got up I started dinner and while the chicken was cooking I looked up liver biopsy on the Mayo Clinic site.  **On a side note- Mayoclinic.com is my go-to site for anything medical.  The only other site I use on a regular basis is that of the Cleveland Clinic.  There is something about WebMD and the other sites that I just don't trust- so that's my endorsement. **  According to Mayo- it could be a couple of weeks before my shoulder and ribs are "right" again.  Knowing this- and knowing that part of my lack of sleep is that I can't get comfortable at night because my muscles in my ribs twitch and my shoulder hurts- I resolved last night to power through.  I will go back to work today and I will do what it takes to make it work.  I am not going to let this kick my butt any longer.  When I am in the frame of mind where the exhaustion wins- I am not being positive.  I am determined to get back to that positive place.  The biopsy is over.  The results are in.  I got the call while I was sleeping yesterday afternoon and missed the office hours so I will call today.  I am pretty sure that everything will be fine and if it's not I will deal with it.  Either way- I will put this behind me and move on.  It has been first and foremost in my mind since March when it was first discussed and it's time to let it go.  

I am a lucky, lucky woman

I am heading back to work today.  I am testing this out.  I am still sore and tired.  I am also a walking bruise.  We had a tough time with drawing my blood and setting my IV and because of that- my left hand and both elbows are significantly bruised.  I also have a "nice" bruise where the biopsy was done and my shoulder aches from hitting the nerve bundle.  And that is all the whining and moaning I will do about that.  I slept a lot this weekend- I am not good at being on bedrest but I know that I needed it.  Here is the thing- being on bedrest this weekend I realized just how lucky I am to have the husband that I have.  He completely stepped up to the plate and took stellar care of me. 

He took me to this hospital on Friday and waited until I was checked in and in my johnny.  I told him to go home and relax and instead he went home and got my guest room ready (he even went out and got a DVD player and wired it so I could watch movies) and spent time with the puppies.  He was back (with the coffee I requested) well before I got out of the procedure because we were running late.  He came back at the time my procedure *should* have been done and sat in my room watching tv until I came back up.  When I got back he made sure that my food was open and I was eating so that I could take my pain pill and that I was comfortable enough to sleep. 

When we got home he got me upstairs, showed me how to work my DVD player, set me up with an intercom and checked on me time and again.  He went down and brewed coffee for me and brought up my thermos and cup so I could have it when I felt up to it and then went to the video store and rented new movies for me.  He brought me food, got my fan set in the window and made sure I was comfortable.  The next day was more of the same and on Saturday night when I was allowed to get out of bed- and went to do an errand- he made sure I got back in bed as soon as I got home.  He kept the dogs from being too rambunctious on my bed and shooed them out when necessary. 

Most importantly- he never made me feel like I was putting him out or that he felt like he *had* to do any of this.  He made me feel loved, and cared for and like he was happy to be there for me.  I am so very blessed to have my husband.  I am blessed that after all of these years I never had to ask once for anything that he knows me well enough that he did what I needed to keep me in bed and never batted an eye.  I am grateful that he knows how much I appreciate him and all he does on a regular basis to make my life with my medical issues easier. 

Excitement and Nerves all at once.

This morning I am headed out to the Paul Mitchell School do fulfill my committment to myself to do something nice for me.  I am very much looking forward to it.  I am not looking forward to tomorrow.  In fact- when I think about it, I get that stomach clutch going.  I know it will be fine- I know that I will get through it with little to no problems but sometimes a little information can be bad and I have read about the biopsy and the thought of a "needle the size of an ink pen refill" going in my gut- just not cool.  I think I would be better off having gone in blind-lol. 

I am just grateful that I can schedule today off.  Today is the first anniversary of my MIL's passing.  I knew hubby would be not in a work frame of mind today and I was right.  He took today off and is going to go golfing.  He wants to have no demands and no one bugging him.  He wants to be alone in his head- but he also was happy to have me there with him this morning.  Since we can't go to the cemetary (it's on Cape Cod) we sent flowers and his youngest sister will deliver them.  It was the first thing he asked me about this morning so I knew it was weighing heavily on him.  We will be going our seperate ways this morning but will come together this afternoon and spend it together.  It is bittersweet that we have to have a reason like this to get a day off together.  We have to have an early dinner because I have to fast for 12 hours but perhaps we will go out and enjoy a meal and then come home and snuggle in with the dogs.  I think a quiet evening at home is in order. 

According to the sites I will be on bedrest for at least 24 hours so I am not planning on writing this weekend.  I am going to hunker down with some good books (I bought three new Chicken Soup books) and magazines (I have three months of "O" and a couple of Real Simple) and stay in my bed until Saturday.  Then I have a whole season of The Forgotten (I can't believe they cancelled it!) and Leverage to work my way through. No stress, total relaxation. 

I hope that you all have a wonderful weekend! 

Pink Shirt- Anti Bullying Day

Bullying- do you remember it when you were a kid?  You may not have been bullied, you may have just been an innocent bystander- or you may have even BEEN the bully- but I think we all remember knowing about it.  I moved around a lot.  At every single school or base (thirteen in different states and countries) I can remember at least one- if not more- kid who was "always" picked on.  That shows that it has been a pervasive phenomenon for over thirty years.  This most recent generation has definitely stepped it up.  Beginning with the Columbine tragedy in 1999- the topic of bullying has been very in your face and yet it continues to get worse.  No longer satisfied with verbal taunts and physical abuse- bullies have taken their crimes online, creating a far-reaching and everlasting legacy. The most recent story, that of Phoebe Prince, a 15 year old Irish immigrant to South Hadley, Massachusetts who was targeted by 9 girls (and boys) so relentlessly that she committed suicide, has opened the floodgates for stories of being bullied around the world. 

They say that out of the ashes rises a Phoenix.  Our Phoenix on this story is in the form of two high school seniors; David Shepherd and Travis Price, from Nova Scotia.  After seeing a freshman being bullied on the first day of school for wearing a pink polo shirt, David and Travis mobilized.  Rather than merely confront the bullies, the boys went to a local discount store and bought 50 pink shirts and then used the internet to gather support from their friends and classmates.  The story found here goes on to say that the next day David and Travis handed out their shirts and hundreds of other classmates came wearing their own until there was a "Sea of Pink" sending an effective message to the bullies. It seems the bullies have received the message loud and clear.   This positive story was picked up by Ellen Degeneres who discussed it on her show and from there it has grown. 

Today (April 14th) is Pink Shirt Day.  In many schools in the US and Canada students, teachers and others will be wearing Pink (not limited to shirts) in solidarity of the Anti-Bullying message.  Of course- it was posted on facebook where the word spread like wildfire.  Two boys decided to take a quiet stand and their message was heard loud and clear.  How powerful is that?  I will be wearing a pink shirt today- will you?

What a weekend

Well- it was a really, really busy weekend.  Inventory is complete except for the paperwork follow up, we tore down the fixtures and reset the store.  I am paying for it physically but inside- the satisfaction makes it worth it.  I think that is the quandry for me.  The reason I continue to push myself beyond where I should- because at the end of the day- the pain and the exhaustion are less important than the accomplishment. 

I don't know where I will draw the line or when but I think, knowing that I am a bit of a workaholic it may be quite some time as long as my body cooperates.  One positive change that I have made is finding BALANCE.  I don't pull weekends like this past one without knowing that I have down time in my very near future.  After getting home last night I rested- not napped- but rested and then later we took the dogs down to the river for their evening walk.  That served to bring me down from my work, work, work mode and to make me able to shut my mind down so I could go to sleep. 

This week is a "big" week- I am only working today, tomorrow and Wednesday.  Thursday I am having a "me" day.  Hair, nails, wax- everything I have neglected.  That will put me in the frame of mind I need for the biopsy on Friday morning.  After the biopsy- from what I have read- it is bed rest for 24 hours.  That takes me into Saturday afternoon and I have no intention of doing anything for the rest of the weekend more strenuous than taking Harley and Auggie for their walks.  Just the opposite of this past weekend.  Balance. 

We shall see how that works out.  :-) 

Inspiration

I believe that in my life I find different inspiration in different forms.  This morning- I want to document a couple of my different inspirations. 

Marriage-

My parents have been married for a lovely 44 years.  First of all- that is a very long time considering that my generation is the first generation of kids when divorce became common.  So very many of my friends parents split (some more than once) while we were kids and that is something that we never had to worry about.  After being together for over 45 years- my parents are still crazy about each other.  That is huge!  They love one another and love us girls and were never afraid to show it.  Growing up surrounded by that kind of love; seeing the sacrifices they make for one another and for us; it's a terrific lesson for us.  If you aren't sure if successful marriage can be influenced by what you grow up with- consider the fact that we girls have been married from 15 to 24 years.  We have all had our ups and downs but we have stuck with it.  That's something to be proud of but I can say that (at least in my case) when the going gets rough- we think of Mom and Dad. 

Joy-

As we get older, as we take on more responsibility, as we "grow up", I think we lose a bit of our joy.  Think about this for a minute.  Do you remember when you were a child and went to the park and hopped on the swing and pumped and pumped and pumped until  you felt like you were flying?  Do you remember the first day of the summer that you could go outside and turn the sprinklers on and run through them with abandon?  How about laughing so hard that you couldn't catch your breath and then giggling about it all day?  When was the last time you felt that way?  I know that for me it was a long time.  When I think about pure joy- I think about kids and dogs.  Now- my "kid" is now an adult- and my neices and nephews live far, far away; but I have two "puppies" in my life.  When I get home after a long day; when my key turns in the lock- they go into a frenzy.  Auggie is jumping up and down wiggling around and so happy he nearly turns himself inside out.  Harley brings me whatever toy (or shoe) is in between her and me and just wiggles till I take it and play with her.  They radiate so much love and are so happy to see me that it is just infectious!  No matter how bad the day as been- their pure joy at seeing me lifts me up and makes me want to be as happy as they are. 

Kindness and Loyalty-

My sisters are two of the sweetest women you could ever meet.  They are smart, they are funny, they are considerate and are far better than I at remembering important dates or tidbits.  If they love or care about you the two of them stand beside you through thick and thin.  They take the time and think of ways to lift you up (from a great distance I might add) when you are having a rough time and they don't hesitate to show you how proud they are of you.  They inspire me to be a better person in my own life and relationships. 

Physically-

When you have weight issues- it is a common practice to do Before and After pictures.  In fact I need to take my "before " pics very soon , I just haven't had the time this week.  It's also a fairly common practice to put in a prominant place (like your fridge) a photo of what you would LIKE to look like.  These are mine:

What I like about these two ladies- Jennifer Aniston and Kate Beckinsale- is that both are honest enough to admit that they were not born into those bodies but that they take hard work to look that good! 

They are also in my age range (Jennifer is two years younger than I am and Kate 5 years younger) and look FABULOUS.  Now- will I ever REALLY look that fit and that beautiful?  Not in my lifetime- but I can work toward it to the best of my ability. 

So that is a few of the people who inspire me.  I am grateful to have them to look toward when I am feeling low and find the strength to keep on keeping on. 

A lot to be grateful for this Friday

Just a list today because if I were to talk about each of them- we would be here a week. So here is my top ten list of blessings this week:

1- My baby sister made it through her surgery with flying colors. 

2- I have taken solid steps to get back on the path to personal health. 

3- We are at our inventory point of our year at work and we are pretty well prepared. 

4- This is going to be a long weekend but it will be so productive and go a big way in getting things settled. 

5- I had a bit of an AHA moment this week- which is always a nice feeling. 

6-  The pups are getting used to their new "crating" situation and Auggie is doing well with *most* of his training.

7-  The weather this week has been beautiful and we were able to enjoy it.

8-  I was able to book baseball tickets this week for three games!  We will so enjoy that. 

9-  I also was able to book a tour of Waverly Hills Sanatorium for Karyn and I when she comes to visit in August.

10- I have that visit to look forward to as well as both of my sisters visiting this summer. 

The Downers

You know the ones- the Negative Nellies who are on your Facebook, Twitter or other Social Media tools who constantly post how horrible their lives are.  They are always having a bad day; the weather is horrible/the weather is nice but they can't be out in it; they stubbed their toes/their pain is worse than anyone else; they hate their job/ they hate being unemployed; they are bored/they have too much to do blah, blah, blah.

As you know if you have read this blog before- I am on a quest to live a POSITIVE life- and these folks do not help further that path.  The easy thing to do would be to simply "unfollow" them and on Twitter that is exactly what I do; but in my case- the folks that I am friends with on Facebook  are people that I truely care about and it's not as easy. 

My quandry is in how I handle them.  For the most part- I can ignore them.  I am pretty good at skipping over their depressing status updates and going on with my life.  There are times that I feel the need to remind them that despite their moaning and groaning, they have it pretty good.  A little "Pollyanna" post is the response of choice for those times.  The whole "FML" phase is one that makes me crazy. Having friends who are in the middle of the war in Afghanistan and friends who are REALLY in a bad place physically and/or emotionally and then seeing "I got a ticket on the way to work today- FML" or "No one wants to go to the party tomorrow- FML" makes me beyond snarky.  Those responses are generally sarcastic from me.  Then there are the days that I am already having a tough time with positivity or they have flooded my wall with their griping and it serves to set me off.  At that moment I just want to tell them to SHUT UP (or something a lot less nice) and then "delete" them but because I do care about them- I have to get up and walk away. 

I have thought about this a lot recently and I think I need to come up with a better course of action for handling these situations.  One thing I can do is to stop and take a moment to give thanks that I am not them.  I can count my blessings and be grateful that I am able to be positive even in the face of true adversity.  Beyond that- it may be time to re-evaluate whether or not I keep them in my sights.  I may have to have a conversation via email or messenger and just let them know how much it bothers me and that though I care about them, I have to block their feeds for my own mental health. 

I am open to any suggestions as to how you handle the "Downers" in your life and are able to not let it bother you.  All I know is that if I am to keep moving forward, I need to address this in one way or the other. 

Be good to yourself

Often, we get so caught up in our lives that we go through the motions without stopping and devoting any time to ourselves.  I can think of a lot of fabulous women and men who are so busy taking care of their jobs, their families, their friends and their lives that they don't have time left over for themselves. 

It can be hard to stop and do something nice for yourself- but we all need to do it.  I remember a time in the not so distant past where I would give myself two hours a week to be pampered.  On alternating weeks I would have a mani/pedi and the other week would be hair.  Fast forward to today and it has been- I am ashamed to admit- 16 months since my last hair cut.  I recently went to have a pedi because I could NOT bring myself to go to Florida without it.  I realized while sitting in the chair that it has been since last summer that I had indulged in that as well.  Time has obviously gotten away from me and I have been so busy with life in general that I let those things go.  Are they essential in life- no, but I really enjoy them.  When I am in the chair letting someone else take care of me I can fully relax and just enjoy the experience. 

It may sound silly, but I find that when I do something like schedule some salon time, I feel better about myself.  It's not even remotely about how I look when I come out- it's about taking the time to do something that is just for me.  It's about telling myself that I deserve some pampering and that I am worth the time and attention that I am paying to myself.  I feel the same way when I take a day and wander through a museum with a like-minded friend or go to an outdoor cafe and sit with my feet up, sipping a nice macchiato, watching people and writing down my impressions or reading a great book.  It indulges that place inside me that has nothing to do with responsibilites and everything to do with pleasure.  It feeds that peaceful, quiet place in my soul. 

The question that begs to be asked is- if it is so "good" for me, why do I not indulge more often?  The answer is simple.  Like so many others, I fall into the trap of putting myself- or rather my indulgences last.  I enjoy devoting my time to my husband, my pups, my family, my work and other responsibilites; I just let myself get caught up in everything else in the process.  Don't get me wrong- I love my life, I just feel like something is missing- and that something is taking care of the part of my life that goes beyond my health. 

In order to correct that I am giving myself April.  The whole month I am going to make it a point to do things that I enjoy because I enjoy them.  I am going to be as good to myself as I would a friend.  I am going to schedule in "me" time the same way I would a meeting and make it as much a priority.  I am going to do this because I AM worth it- and so are YOU!  I hope that you will join me, even if for an hour, in giving yourself the gift of "you time" this month.  You may find that it reminds you just how many blessings you have in your life and you will most assuredly be grateful that you did. 

Taking control where you can- positively.

In just a few days, my baby sister is undergoing a gastric bypass.  That is an enormous step for her.  My sister- for the most part- treats her body holistically.  Where I have a primary care physician and a rheumatologist who are my main sources of medical treatment- she has a chiropractor.  Where I have several weekly drug regimines- she uses supplements to keep her healthy -and rarely even takes an asprin.  While I have been fighting RA for four years now, she has battled hip problems since her time in the military which has made exercise difficult for both of us.  One challenge that we share is our weight issue.  That particular gift comes from our Mom's side.

Mom, unbeknownst to any of us, has lived with a clotting disorder for many years.  When it was finally discovered it was traced through her medical problems all the way back to her first miscarriage in 1976.  Probably around then her thyroid essentially stopped, causing a large weight gain over the years; in 1992 at 45 she had a heart attack (which is when they discovered her thyroid issue) and a resulting double bypass; a knee replacement and the development of diabetes in her 50's and at 59 she suffered a stroke.  She is doing so well today.  The only lasting sign of the stroke that is there is that when she is tired, she tends to lose her words- something I can completely relate to with my "RA Brain".  It's actually kind of funny.  When we are tired and are having a conversation it trails off as we both lose our train of thought and struggle to find the words.  We often joke that someone coming upon us at those times would not be able to tell which of us had the stroke.  Mom also lives with her weight issues.  Through all of her medical struggles- she has been unable to solve that problem.  Beginning when she was pregnant with me she began to gain weight and it never left her.  Even when she had three under 5 and ran around like crazy after us she could not lose weight.  She cooks healthy meals, she takes her medications but for her it will be a life long "thing" she lives with. 

If you look at many of the women in her family- they look a lot like me.  We are not tall- my baby sister tops us out at 5'6"; we are not slender- I am a size 16 and off the top of my head I can only think of our middle sister and my mom's older sister who are naturally smaller and I would bet they are both lowest double digits.  Knowing this- neither the youngest or I aspire to be "skinny".  We just want to be healthy in the part of our lives that we can control.  We are closing in on 45 (I will be 43 in a couple of months- she will be 39 at the end of the year) and neither of us wants to face the scary things our Mom has triumphed through.  For my sister, after a solid year of considering it and working very hard to lose weight naturally, that means a gastric bypass.  For me- I bit the bullet the other day and rejoined Weight Watchers.  We figured we had struggled together over the years and we could share this journey together as well. 

Tomorrow is my first meeting in over 2 years.  I am a little nervous because this is all on me.  I can do this- I know I can.  My first time through WW- I lost 25 lbs in just about 3 months and then started preparing to move to the midwest.  This time I am in it for the long haul and will set my goal at 60 total.  That should bring me down to a good, healthy weight.  It is right in the middle of the suggested weight range for my height.  The hard part for me is re-learning how to eat and having the patience to last it out.  It's a slightly different program from the first time around so I have to relearn that as well.  Fortunatly- I have the support of my husband, my sisters and the rest of my family.  They just want us healthy and happy.  So this is me- taking control of this part of my life.  I may not be able to control my RA; I may not be able to control my Fibro; but I can control my weight- and this is my first step. 

Happy Friday!

It is a beautiful morning here in Kentuckiana.  Sixty one degrees before the sun has even come up and heading toward 80 once it rises.  There is a gentle breeze coming in the back door and the puppies are behind me in their beds just snoozing.  They have no idea that I (known today as EVIL MOMMY) am taking them to the vet for their check-up and shots in a few hours.  They won't be happy with that but as soon as we get done the three of us are piling back in the car and heading to my see my parents for the Easter weekend.  My honey has to work today and tomorrow so he will join us when he gets out of work.

I am facing a fear this weekend.  My father has asked me to serve as liturgist for one of the churches on Sunday morning.  Public speaking is not my forte.  My hands get clammy, my face flushes and I tend to speak too quickly.  I am going to have to slow down, take a deep breath and try to remember to talk SLOWLY.  It's funny because years ago (like 29ish?) I was cast as one of the leads in Arsenic and Old Lace and I LOVED it.  I loved the performances, the rehersals, the whole process.  I didn't mind being up on stage- because I wasn't being me and I knew how it would go. On the other side of that coin put me in a room where I have to give a presentation and I quake.   But I will do it- because my dad asked.  It's a small church- though it tends to swell on the holidays- and it will be over in an hour.  More- dad knows me well enough that he sent me an email with the material and his blessing to take my travel cup of coffee up to the lecturn with me.  It's like a security blanket even if it's empty.  I will use this as practice for the presentations I need to give at work in short order.  Can you tell I am psyching myself up- or is it out?  :-) 

Either way- I hope you all have a joyous Easter weekend. 

Welcome April!

If today is any indication- it is going to be a beautiful spring.  At 6:30am it was already 60 degrees according to my weather channel "bug" on my PC.  It is supposed to hit 80 today and tomorrow.  Outside my building and all across campus the daffodils have raised their lovely faces to the sky. 

Many (MANY) years ago- in about 7th or 8th grade, I was required to memorize and recite "Daffodils" by William Wordsworth for my English class.  Do they still do that any more? I dont' recall my son even studying Wordsworth- but I have never forgotten that I did.  Anyway- each and every time I walk onto campus in the spring, I am reminded of this poem and I feel it's appropriate for this sunny April 1st. 

"Daffodils" (1804)


I WANDER'D lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;

Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.
Continuous as the stars that shine
And twinkle on the Milky Way,
They stretch'd in never-ending line
Along the margin of a bay:

Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.
The waves beside them danced; but they
Out-did the sparkling waves in glee:

A poet could not but be gay,
In such a jocund company:
I gazed -- and gazed -- but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;

And then my heart with pleasure fills,
And dances with the daffodils.

By William Wordsworth (1770-1850).


Happy April- I hope that Spring has sprung in your neck of the woods as well. 

We have a good time and we pay for it?

A big resounding YES to that question.  Now- I know that most people do too in some form or another (remember Hangovers?) but for those of us with chronic pain, our "payment is entirely different. 

Last week I had a wonderful time.  I went to our annual company manager's meeting in Orlando.  I got to spend time with the other managers in my region (the BEST region full of folks in the company TYVM) and network with the terrific folks that I went to "new manager's training" with a couple of years ago and their friends.  I ate terrific food- they feed us like every meal is our last- and enjoyed the entertainment.  I saw all of my regular vendors and checked out a LOT of neat products.  I even ordered a few. 

Then came the payment side.  I was in the air probably 30 minutes on the way there and some of my joints started literally screaming at me.  I will assume that was related to the cabin pressure.  I enjoyed my flight but I have never been so glad to be off of a plane.  By the time we landed and got our luggage the pain had subsided so I was good to go.  The next few days were fine except that I was beyond exhausted.  They kept us going from 7:30 am till 10 pm and beyond every night.  That's pretty late for me to be go,go,going.  It would take until midnight or so to decompress and get to sleep and being that it was late and I had to get up early I didn't sleep well.  There was also a lot of walking involved.  Walking from the hotel end to the conference end of the resort, walking from one area to the other.  Walking the trade show floor.  By Thursday after lunch, my feet had had enough.  The swelled up so much I couldn't even think about wearing shoes any longer.  I had to run (ha!) to the gift shop and pick up flip-flops and just pray that there wouldn't be any consequenses professionally.  Fortunately- there was only one class left and then our very casual end-of-meeting party to attend. My dad sent me a message via facebook to use the hot tub to soak my feet- and I jumped on that until the lightening got so bad that it was almost daylight when it flashed.  I also gave thanks that I had thought to pack my spa socks because they were a godsend in the airport and on the plane home.  When I got home- I was exhausted.  The trek to the far side of the parking lot had me using my "smartcart" for support.  Yesterday I spent the majority of the day re-charging.  I didn't change out of my pajamas until 5pm when I woke up from my nap.  I finished the day with some power-shopping for stuff we needed for the house and then let PF Chang's cook my dinner.  It is now 10:53 and I haven't even changed out of my jammies yet and only plan to throw on some sweats to go to the grocery store. 

Today I am back to my routine and reflecting on my last week.  Was the experience worth the pain- absolutely, 100%, no questions asked.  The only question is- what will I do differently next year?  Well- it's time to talk to my doctor about a cane and a handicap placard for when I go on trips.  I think I will have to pick up some new "stylish" crocs  and shoes this year so that I can have the comfort and still look somewhat professional.  I will bring shorts and *maybe* even my bathing suit so I can spend time each evening soaking in the hot tub.  I am also going to plan on bringing my backpack on rollers instead of my laptop case so that I can use that to carry all of the samples and things they give us- because lugging that stuff gets heavy really quickly.  More importantly- I am putting it all on paper now so that when I go to pack for next year- I don't forget! 

Tomorrow it is back to work for me- and back to my normal routine. I hope everyone has a lovely palm Sunday and is busy making plans for a terrific Easter next week! 

It's been a terrific week

Wow- what a week it has been.  I was given a promotion- which is wonderful news! Part of that promotion means that next week I head to Orlando for an annual manager's meeting.  I love that trip.  Last time I went I met wonderful people and I learned so much! Even though I don't have a lot of time to prepare-and will miss my honey and my puppies- I am really looking forward to it.

 I met the gastroenterologist who did a thorough exam.  She told me she was not pulling me off the MTX until she sees what is going on and sent me for blood tests.  Eight vials later and I think they tested me for everything but a DNA match to the Lindberg mystery.  The next morning I had to go back to the hospital for an ultrasound.  I wish I could tell what those pictures meant but they really are just a blob to me.  When I get back I am sure I will have test results but - now for the glimmer of hope- they called me while I was in for the ultrasound and told me to stop taking my Flexeril immediately.  It seems that it can cause the elevation in liver enzymes that I have been experiencing!  While my Fibromyalgia is a pain (literally) I can live without that medication.  If it is the solution that will allow me to stay on methotrexate- I will gladly give it up. 
If the ultrasound comes back clear- which she suspects it will- the next step will be a biopsy of the liver.  They will take a couple of small samples to see if it is just "injured" or if it has progressed to diseased.  The doctor feels we are just dealing with an injury. 

Besides my wonderful promotion- and my trip to Florida- what I am thankful for is that I have two wonderful specialists who are conservative in their treatment of me and my disease(s).  More- I am thankful for the outpouring of support I have received from my friends and family for the medical issues.  But the thing I am most thankful for this week- is the number of people who believe in me (even when I am feeling insecure) and who were genuinely happy for my promotion.  Colleagues, friends and family who were proud of me and who have faith that I can do this job.  That gives me the inner strength that I need to tackle this all at once. 

When Life Throws You a Curve Ball.

I spent last night having a personal pity party.  We have been watching my liver enzyme levels for the past several months.  A normal reading is AST 5-40 and ALT 7-56.  Mine have been fluctuating between 56 and 122 for both.  At my appointment in February, my doc and I agreed that we would lower my MTX slightly and see if that did the trick.  Evidently- it did not as my results are back from last week's blood tests (I love my doc's three day turn around time) and my numbers are at 205 and 174.  Never, ever let it be said that when I do something I don't do it with gusto.  :-s

Though I should have seen it coming- I was very hopeful that by lowering my MTX- we would head things off.  I do not want to give up my Methotrexate.  I have said that a thousand times- to my doc, to family members, to myself.   I know that everyone has different reactions to meds- but for me Methotrexate has been my savior.  Over the last two years I have gotten to the point that I feel better than I did before my diagnosis.  I started on the feeling better path right after we put me on MTX and just got better and better as we upped my dose.  It was only after I had been on it almost a year that we added Enbrel to the mix.  When I started having my liver issues I offered to go off every other drug in my regimen if it meant keeping the MTX.  That didn't fly with my doc. 

So now- I am headed to a Gastroenterologist.  My doc actually scheduled my consult with the GI doc for next week.  I have been pretty much guaranteed that she will pull me off my MTX immediately.  That scares me because pre-mtx I was just about at the point of needing a cane.  I don't want to go back there.  I don't want to go back to taking hours to be able to get dressed in the morning.  I don't want to go back to having to time walking the dogs so that the pain is not too bad yet.  And there I go whining again. 
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In the hour and a half or so since I began this post, I found out that one of my online friends lost her 1 year old daughter last night.  It rather makes my whining above seem pretty foolish.  My heart just breaks for her.  It puts things in perspective very quickly. 

For me that means that I am going to spend the next week- while I wait for my doctor's appointment- giving thanks for every single thing- big and small- in my life.  I am going to hold my loved ones closer.  I am going to take things in stride because really- the alternative is a choice I don't want to take. 

Today's Aha Moment

I Had the most wonderful day with my honey and my puppies today. The weather was just beautiful weather.  It was in the 50's and sunny out- very much the peek of spring that has been missing in our lives.  When Jim got out of work we took a mini-road trip back to Madison.  When he called to tell me he wanted to go up there and get burgers- I just rolled my eyes and changed my clothes.  We really enjoy our rides together and it is not unusual for us to drive for good food.  In this case it is only amusing because we drove an hour each way for a meal of White Castle sized burgers and fries- but much better quality.  It was all of a $15.00 meal- including tip. 

We came back home, we took a nap and then when we got up we ran to the store and phamacy and then got the dogs in the truck and took them to walk along the river.  When there aren't a lot of people around there we can let Harley off her leash and let her run.  This time we let the dogs run- and I ran a little with them. Just a little- but more than I could have a year ago.  As an overweight smoker I always joked that the only way you would get me to run was if someone was chasing me- and today I got those legs moving.  And now I am having a really yummy salad for dinner then watching Survivor with Jim.

It was as we lay down to sleep this afternoon for our usual "family nap" that I had my Aha Moment.  I was on one side of the bed, Jim on the other with our hands touching and Auggie was laying with his head on my leg.  Harley started out near Jim but moved over to snuggle against my other leg. It was a very sweet moment and as she settled in, a sense of peace stole over me.  I looked down (up?) at them; smiled and thought "Yes!  This is my life and it is just how it should be."  That was my last thought as I drifted off into the best sleep I have had in weeks.  Two hours later I stirred and stretched and the puppies stirred and stretched with me and then came jumping over to give me kisses before I helped my little old lady Harley down off the bed. 

I am so thankful for the day we have had together.  It was completely spontaneous, it was not something remarkable, but it was the kind of day that if you have that moment as I did, you realize that you are so truly blessed and none of the "bad stuff", none of the stress, none of your worries- can take that away.  It also sends me to bed tonight open to another day just like it tomorrow.