Saturday, June 27, 2009

I was reading this morning- I read his blog every day. This morning he was talking about depression and dealing with it. While reading his blog, I thought about it and I came to the conclusion that I think I have a really weird hang-up about depression.

I can't deny that I get down; I have the "why me?" moments, the "what in the world is going to happen to me next?" moments and the overwhelming fear that goes with living with a chronic illness and chronic pain. My weird hang-up is that when I get into that mode- and then realize that I am in that mode- it makes me angry. Angry is actually kind of mild. I become furious. Furious at the disease for existing and choosing my body to invade, and furious at myself for failing to stay positive. The anger is a good thing in a way. I don't like being down in the dumps and the anger is completely different. I am not saying that being that furious is a good thing- but the anger burns itself out a lot faster than if I were to allow myself to spiral down into the pit of despair- which is always a possibility if I don't recognize the signs.

I try so hard to be positive. I try to be genuinely grateful for all of the things in my life that I have been blessed with. I can't help but think about my physical illness every single day of my life. I know that. There are pill to take, shots to inject, and there is the fact that I have to arrange my life around them and the side effects that they bring and my ever-changing physical limitations. That means that it is never far from my mind.

I read a lot of Rheumatoid Arthritis and Chronic Pain messageboards. So many of these people are so very miserable in their lives. It makes me very sad for them. They don't talk- even in the off topic parts of the boards- about anything that doesn't relate to their conditions. After a while I can't even read the boards. That is what keeps me out of support groups as well. I can absolutely give support when it is needed or desired. I am happy to do so. The problem is that I feel that when you are in a negative place- everything else negative in your life magnifies and it can just take over. I don't want to be like that.

What I don't want is for this to consume my life. My life is far more than just my disease. I am a proud mother, a loving wife, a good daughter. I am a loyal friend, a hard-working employee and hopefully within a year or so I will go back to being a student. I am honest, I am smart and I am inquistive. I am creative, I am well rounded (in more ways than one-smile) and I am passionate. I feel that when I get down I am letting the RA become more important than the other aspects of who I am and that is what fuels the anger. I know-it's weird- but that is me. It's who I am and I know that. In some ways it encourages others to diminish what I deal with- but I would rather that than to lose the many important other parts of my life.

SO that's that. Now I know where I am with the topic of depression and what makes me tick. I am off to take a shower so I can take the hubbs to urgent care when he gets out of work because he looks like he walked into a swarm of mosquitos and it is spreading so he is miserably itchy and uncomfortable. Here's hoping they give him a steroid injection that will take care of his itchies and let him get some rest. Have a pain-free day!

Friday, June 26, 2009

Quick notes of gratitude

This is yesterday's list but there was a glitch so it was sitting in draft mode. LOL

*I am so thankful to be back home. It has been a long week.

*I am thankful that we had a beautiful storm this morning (even if it meant being up at 3:00 am)

*I am thankful that the power came back on after only 3 hours. LOL

*I am thankful that I was able to spend two days sharing ideas and information with a bunch of really bright people and to learn new things both days of this meeting.

*I am thankful that I have had time to think and reflect and know what my focus needs to be at the moment.

*I am thankful that I have another day to try and live in the present and not get bogged down in the past or stuck trying to figure out my future.

Monday, June 22, 2009

Father's Day

I know that I am a day late on this one, but I had a million things to do and wanted to think about this while I did my stuff yesterday.

I am very, very lucky. I have the most wonderful father in the world. Now- my mother is also wonderful- but I want to focus on Dad at the moment. For the majority of my life, my dad served our country. He was an enlisted military man from before I was until I was 2 when he came back during the Vietnam era (1969). Then he supported us girls by working at the Whirlpool plant while going to college and fulfilling the ROTC requirements in 1975. At that time, he went back to active duty as an officer. We followed him across the country and overseas until each and every one of us graduated from high school (and Heather from college) and all got married. He did days, he did nights, he did remote tours and at some points frequent TDY's. Mom was definately a force during this time as she was the glue that held us together- but never once in our lives did we doubt that Dad loved us. In addition to fulfilling the frequent demands placed on him by Uncle Sam- dad coached our little league teams, helped Mom with Girl Scouts and attended as many of our games, performances and recitals as he possibly could. In addition to being completely involved with us- he also lead his troops with the kind of hands on leadership that showed us service to others. After retiring from the military in 2001- he did a complete 180 degree turn and served his community in a new way. He became a pastor at not one but two churches. Overall Dad has a great heart and taught us family first.

I also lucked out and found Jim. Though we have definately had our problems in our marriage- one thing has always been consistant. Jim was a good father to Josh.

It is my hope that one day Josh will take what he has seen from the two of them and one day be a good father himself.

I am so grateful for the men that I have in my life.

Thursday, June 18, 2009

Down time

I love down time. I really am grateful for having my weekends and evenings free. I know that that may sound silly to some- okay most- but you are looking at a person who has been known to work 100 days in a row- with no day off. When I did have a day off it was more about recovery than recharging my batteries. How crazy is that?
Now, my possibilities are limitless. I can do anything from curl up with a good book to take a long walk with Harley to take a weekend away.

I am thinking about this this morning because Mom and Dad are on "vacation". They head to Vegas several times a year, but this time they are driving up to Mackinac Island. They are meandering up to the Island and then back, spending a couple of days in Amish country then coming back through Dubuque and seeing the sights. That is just the kind of trip that Jim and I would love. Road trips are so enjoyable. Especially road trips where you can take your time and see the area, not be under any pressure to get someplace by a certain time. Some day when we can afford that kind of trip- we will do it. Until then- I will put a photo of the island on my vision board and use it to keep my dream alive.

I will also use it so that I don't take my time off for granted. I need to work on getting to a place where I keep up with my home duties during the week so that the weekends aren't taken up by errands and housework. I guess that just is another area where I am a work in progress. :-) It's a blessing to just have the opportunity to keep working on this transformation.

Wednesday, June 17, 2009

A gratitude list.

This morning, I just want to think about some specific things that I am grateful for.

I am grateful that we have a roof over my head and walls to keep me safe from the weather. I know that far too many people are without those simple things.

I am grateful that despite the odds, Jim and I still love one another so much after over 23 years.

I am very grateful that Joshua was born healthy and remains so after 22 years. I have dear friends who struggle with everything from Autism to Downs Syndrome to physical issues with their children and we are so very lucky to have had a healthy child all around.

I am grateful that I have a wonderful family. Many of my friends were raised under extremely difficult circumstances. I could not begin to touch on the dysfunction that they grew up with. I am so very lucky to have had a happy childhood surrounded by love and affection. I hate that I took that for granted and wasn't as grateful for it as I should have been while it was going on. I only hope that Josh can look back and feel the same way one day.

I am grateful that we both have jobs. This economy is very, very frightening. Most anyone who is job hunting is looking at a minimum of 6 months out of work or taking anything they can to make ends meet. We have been very fortunate. I work for a company that is taking hits but is very solid. Jim has a good, solid, and very diverse background. Because he is so versatile he has been kept on over people who have years of seniority. Each round of layoffs we have given a big sigh of relief when he was spared.

I am grateful for the ability to have kept in touch with so many people who have meant something in my life and to have come back in contact with many more. If it were not for facebook and email- many of these folks would be lost to me.

I am very grateful for medical science. I cannot imagine where I would be right now if it were not for my methotrexate and my other meds. I do know that I would not be able to sit here this early in the morning and type all of this up. Before MTX it was up to four hours that my hands just didn't work at all. Now- they are relatively useful in about an hour. If it goes under twenty minutes, I am officially in remission. I am so close that I can live with this forever. MTX has made a huge, huge difference in my life.

I have so many blessings in my life. I really am a very lucky woman.

Monday, June 15, 2009

A little post about The Shack #1

So my parents read this book. Wm. Paul Young's The Shack. They were both blown away, and they even used it for a book discussion at their church. They told me about it before the discussion and told me they would pass it along when the group was over. In the meantime, my boss and several other people also recommended it. I have to admit- that when a book gets that big of a build-up I have a tendancy to avoid it because I honestly don't want to be let down. Right around when Mom and Dad finished and gave it to me, I joined a book club on Facebook and since they were looking for books to read, I suggested this one. I still wasn't sure I wanted to get into it, but the premise to this one really piqued my curiosity. God (aka Papa)as a large black woman? Jesus as a middle eastern man? The holy spirit (Sarayu)as a small oriental woman? Taking a man back to the sight of his worst tragedy to meet God in person? Where could this story go?

Then I read it. It honestly blew me away. I was so enthralled with it that when I finished it, I told my fellow bookies that I wanted to read it again- with a highlighter- before I discussed it. Saturday afternoon, I got through three quarters of it again with my highlighter. I am sure that as I review it again and again- and I AM keeping it- and as I discuss it with my group there will be so many exciting things to write about but today I want to touch on my three biggest takeaways.

In this book, Jesus asks Mack where he lives the most of his life- in the Past, the Present or the Future in his own mind. Like many of us, Mack spends a lot of his time in the past and the most of the rest of the time trying to figure out this future. We spend very little time just living in the present. Why do we do that? Our lives go by so quickly as it is and here we are thinking about what was and what will be rather than what is. One of my new goals is to retrain myself to live NOW- not focus so much on the past and the future. SO- if you see me falling into that trap- call me on it!

The second thing that really touched my core was the relationship between Papa, Jesus and Sarayu. It was a relationship that awed Mack as well. Several times they talked about the dynamics and the best description was that it was a circular relationship. There was no Chain of Command amongst them. Because there was no concern with power and because they considered themselves all equal, it freed them to be able to be as concerned for one another as for themselves. Is that something that we, as people can achieve? Can we learn to let go of the importance of our own wants and put our mates wants and needs as equally important to our own? There is so much more to it than this, but I haven't figure out how to articulate it and I think that as I figure this out I will figure out how to apply it to ALL of my relationships- and perhaps by example, start a small revolution within my world.

The final thing that had an impact for me was the importance of forgivness. This is something that I have been working toward and struggling with for several months now and I think that is why it so resonated with me. The very important part for me is this: "Forgiveness does not establish a relationship." and further "Forgiveness is first for you, the release you from something that will eat you alive..." I think for me, that has been the sticking point. I have always felt that by forgiving I was giving the okay to be back in my life as if nothing had ever happened, but I have learned from this book that that is not how it has to be. I don't need to have people who have wronged me in my life- I need only forgive them and then move on. That way the anger and irritation that festers inside me can be banished and I can put more positivity and gratitude in its place. That would be a much better place for me mentally, physically and emotionally. So that is my biggest goal. To open my heart and forgive those who have hurt me and mine in the past and then choose the ones that I want to reestablish a relationship with and not have any guilt about any that I don't.

If I can acheive these three things, I will be filled with grace and peace. I am so thankful that this book was available to touch my life in this way. I look forward to sharing more with you as I go on.

Thursday, June 11, 2009

My Story for the Access for Affordable Healthcare forum

I was diagnosed with Rheumatoid Arthritis in 2005, just a month after my 38th birthday. I was one of the lucky ones. After about a year of repeated - yet sporadic- treatment for carpal tunnel, frozen shoulder and bursitis, my LPN listened to what I had to say at my yearly physical and sent me for bloodwork. My rheumatoid factor came back very elevated and I was off to the rheumatologist.

In the last four years, I have been through two rheumatologists (due to a cross country move, not dissatisfaction), a plethora of pharmaceutical cocktails and countless hours of pain. I am at a point now where I am currently taking Tramadol every day for pain and Folic Acid every day to combat the side effects (hair loss) of my other medications. Every Sunday I give myself an injection containing a cc of Methotrexate, which makes me so tired that Sunday's are generally a forgotten day. On Wednesday, I give myself an injection of Enbrel at lunchtime. This drug gives me a burst of energy for anywhere from 4-6 hours and then I crash- much like a steroid would work. That means that on Wednesday, I am in bed around 6:30 pm. When I was diagnosed and up until we found this combination, I would wake up every morning at 5am so that I could let my body have enough time to be functional by 8am when I had to go to work. It generally took three to four hours before I had full use of my body parts. Thanks to my current drug regimine I now have full use in about an hour.

Though this combination has done some very good things for me, it has in no way eradicated my pain. I still have constant pain in my feet, my hips, my back, my shoulders and my neck as well as roaming pain in my knees, elbows, wrists and fingers. I do not sleep through the night- which of course affects my productivity. Because of this, my rheumatologist has gave me Flexeril approximately 6 weeks ago to try and help me go to sleep at night. Thus far it has not made a difference. When I return tomorrow morning for my follow up visit and my routine bloodwork she will let me know if she has determined if we are dealing with Fibromyalgia as well as my already determined Chronic Fatigue Syndrome.

In many ways I am very fortunate. I have had the luxury of health insurance since before my diagnosis. My current out of pocket expenses are a $300.00 deductable each year, and then 20% of my bills for the rest of the year- that is a minimum of 10 visits to my Rheumatologist alone, bloodwork at each visit, and routine x-rays. I also pay just over $80.00 a month for my medications- medications that without my insurance would cost me $2687 a month. Last year I had physical therapy for a couple of months. I am still paying for that. My doctor currently wants me to have hydrotherapy. Though it would be very beneficial for me, I have opted to wait until my therapy bills from last year are paid first. I am fortunate that I have a supportive family and a high tolerance for pain. I am also fortunate that aside from my RA related issues, I am a fairly healthy person and don't need a lot of other medical care. I cannot imagine how we would pay for all of the care that I do require if we had no insurance.

That said- we need healthcare reform. Even with insurance we are barely getting breaking even each month. RA is an unpredictable disease. I could still be where I am right now in 5 years but I could also be in a wheelchair by then. We will never know. In the worst case, I would have no way to perform my job, a job that is already being affect at this point. Without my job- I have no insurance. It is a viscious cycle and it needs to be addressed. It is my hope that the current administration can take the necessary steps to insure that people like me are not left by the wayside and do not end up facing losing everything over this disease

Wednesday, June 10, 2009

Ahhhhh, midweek

It is so funny how much I look forward to my weekends now. After so many years of giving them up to work I seem to guard them very jealously. This week is a little awkward. I see my Rheumatologist on Friday morning at 7:30 and then Friday afternoon I have a massage scheduled. Friday morning I guess I will find out the verdict on whether or not we are dealing with Fibromyalgia as well as RA. I just don't know how to feel about it. On one hand I want to pound my fists and cry. On the other, it's just another thing to deal with. Whatever the answer is- I can handle it. I WILL handle it. Of course- having a massage scheduled that afternoon. That was the best idea my sister has had recently.

Saturday I am proctoring the Praxis tests from 7-5. I guess it's the closest thing to a "part time" job I will have these days. Basically- I get to sit and watch these kids take their tests. It's decent money and only once a month at the very most. Its a good thing. Gives me a little extra money for medical bills or for things like that. I have another one in July then they are done for the summer.

Sunday will be time to relax. I am hoping that we go back to the zoo. We will have to see how I am feeling on Sunday morning. But even if we don't do the zoo, and we just relax all day- I am good with it. I really, really enjoy just having time to decompress and relax. I never knew how much I needed it and what I was missing- but now that I do, I can't imagine ever giving up my weekends on a routine basis again. I am so grateful to have my weekends, and grateful to be able to look forward to them. It makes the whole week seem to fly once you get to this point of the week.

Tuesday, June 9, 2009

I cannot believe the year is half over.

I woke up this morning bright and early (Thank you for Harley who went to bed early with me last night) so it was even earlier than usual when we went out for our walk. The stillness of the morning just grabbed me. It is a weird feeling to be out there with little Miss Dog and be the only people/things even stirring. There were one or two lights on in homes- but essentially, it was just us and the morning sky out there. There was a beautiful breeze that would come up just as you would think it was getting warm. There was no noise-NONE- when we walked away from the house. It wasn't until we were coming back that the birds started chirping, the planes (which we usually see circling while they wait to get in to Louisville airport) started heading in.

What this did for me was it really reminded me how small we are in comparison to the whole big world out there. It makes you stop, really stop and it heightens your senses as you look around and listen to see if there is anything else out there awake. The world and your little area of it just seems endless. As I did my morning list of things that I am grateful for- it really kind of put things into perspective. It made all of my worries seem so insignificant in the long run.
It was funny, it was right about the time that I was thinking about how very lucky we are that the world started waking up around us. Coincidence? Who knows? But it felt significant to me. Maybe I should start getting up at 4 every morning if it will help with perspective. We will have to see how the whole getting to bed early thing goes first.

Monday, June 8, 2009

A walk on the wild side?

Harley and I went out for our walk at 4:45am- but our walk was a little unusual this morning. First, we saw the most beautiful moon as we walked out the door. It was completely full and almost a light orange in color. I actually stood there mesemerized for a couple of minutes and I found myself looking back at it as we walked along.

It was also an interesting morning because as we approached the country club Harley spotted a deer. All 17 lbs of her let out a little "boof" and the deer started to take off and so we kept walking. As we came even with the driveway (we were on the other side of the street) the deer was standing there watching us and Harley stopped and just stared at it for a few beats before she started "boofing" again and soon the deer took off. I don't know what they though of one another- but I would love to know what was going on in both of their minds. The only light was a pale brightness from the moon so I couldn't tell if it was a doe or a very young buck- but whatever it was, it was very graceful and it apparently decided that Miss Harley was a bigger threat than her size.

Walking her in the morning (and evening) we could be walking anywhere. We see some traffic and rabbits on both walks, squirrels, people and cats in the evening. It is the clarity of the sky in the morning and seeing that deer serves as a gentle reminder that we are in a somewhat rural area. It definately makes me smile and starts the day in a good way. It pushes all of the exhaustion and the aches and pains out of the mind and allows me to just be very in the moment. For that, I am eternally grateful.

Sunday, June 7, 2009

A lovely- normal-Saturday with my honey.

Yesterday we had nothing major on the agenda. We planned to go to Louisville to pick up cigarettes (we WILL conquer that habit one day!) and decided to check out the Oxmoor Mall and make a stop at WholeFoods while we were in town.

We spent the morning just piddling around and around 11am we decided to nap. Took a good long snooze and I got up before Jim and Harley so I sat on the porch and finished reading "The Shack". It is an amazing book- but it deserves a post of its own so I am not going to go into it here.

We headed out after our afternoon nap and stopped at Cox Smokers (yes- we are immature enough to occasionally snicker at the name-lol)and at the Harley place next door they were doing some kind of smoke show but we didn't stay around. We hopped back on the highway and got down to Oxmoor. We didn't know what to expect since the closest "mall" to us can be walked end to end in just under 10 minutes.

Now-I should preface this with- I am NOT a shopper like a lot of women. I hate buying clothes. Pretty much, if I try it on- it won't come home. I have some serious body issues and I am fully aware of it. It makes Jim pretty content because that's one thing we won't have to worry about our money going on a lot of clothes. HOWEVER- I love accessories and home things. Imagine my delight when we found a hobby shop up on the second floor (Jim was in heaven) as well as Coach, Fossil and more importantly SEPHORA! I love me some Sephora. I could spend a week in there with all of the perfumes and lotions and all of my Bare Minerals makeups. It is one of those stores that if I had the money- I would be there all the time. It ranks right up there with Bed, Bath and Beyond and The Container Store for me. So we walked around the mall- pleasantly surprised with the stores that they offer. Then we headed over to WholeFoods- which is my very favorite place in the world. I HAVE spent hours in there just looking and touching and enjoying the offerings. This visit we picked up some Naan bread and veggies so that we can do chicken kebabs on the grill today and fruits so I can have them for the week. We headed back to Indiana and decided to do our evening at home.

We had picked up a pizza (we had a coupon which is good- because the pizza was CRAP) from Pizza Hut and went home and ate an early dinner while we watched Kung Fu Panda. It was really cute. We have been very much neglecting our Wii- which we used to death when we first got it- so we bowled a couple of games then pulled out the Wii Fit and got back up on it. I made a new WiiMi because my last one just reminds me how I have neglected it-lol. It was pretty late by then but we decided to stay up and watch Live Free or Die Harder and then headed off to bed.

All in all- it probably sounds like a pretty boring day to most, but what I loved about it was that it was just so NORMAL. Not my "new normal"- but normal normal. We did routine things- none of which I felt limited to do. Even when we went to the mall, we took the elevator up and Jim asked if I would be okay with taking the stairs down (so sweet and supportive- but don't tell him) and when I told him down was fine- I just go a little slower he made a crack about that being age- not anything else-lol. When we went to the other part of the mall when there were 15 or so steps we went down them and he automatically headed to the ramp to go up. Not once did I feel like we had to make special accomodations, not once did I feel like I had to not do something because of my illnesses. It was a whole day of almost forgetting about the limits of my body. I got to spend the day with my honey like your average married couple. That alone made it a lovely, lovely day.

Friday, June 5, 2009

Ginger is a miracle!

A minor miracle- but a miracle none the less. Yesterday I was feeling pretty crappy. Coughing my face off, a heavy weight across the chest, every muscle aching and I couldn't get warm. I am hypersensitive to antihistimines so I just don't take cold meds but napped a lot with little improvement. Once Jim got home last night- I made a "quick" run to the store. I picked up the fixings for a ginger "tea" that I used to rely on when I felt myself getting sick back in my crazy work a million hour days that would head it off at the pass.

I got back home and pulled out a 16 oz tempered glass and brewed up the concoction. As I was drinking it, I could feel the weight loosening on my chest just a little. Even though I had been drinking coffee most of the day, I thought maybe it was the heat from the drink loosening things up for me. As I crunched on the ginger- I could start to breathe again through my nose. Ginger is good for that and always has been. I mixed up and drank another glass before bed and finally got to sleep.

This morning- I feel such a noticable difference that I feel human again. I have enough of my ingredients to have at least two glasses a day for the rest of the weekend. By Monday I will be right as rain and I totally credit this concoction.

If you want to know what I am using- here is the magic recipe:

16 oz boiling hot water
juice of half a lemon
diced fresh ginger- about half an inch of the root
plenty of honey

Put the lemon, ginger and honey in the glass and pour the boiling water over the top. Stir to melt the honey and then let it steep until it is cool enough to drink. As you drink the tea, crunch on the ginger root as it comes to the top. It WILL be peppery but will take on a little of the honey as well from the steeping.

Mix and drink as needed!

I am so grateful that we have the ability to create this totally natural- drug free-tea that makes me feel so much better. And I am also grateful that I will not be spending my weekend flat out in bed.

Wednesday, June 3, 2009

A couple of small things

This morning I am grateful for a few small things. They seem small to the world- but they make me smile.

I am grateful that Josh calls me on a regular basis. I just got off the phone with him and I am grateful that even though there isn't some "big news" or anything earthshattering to talk about, he calls anyway. We just talk about about what we are doing with our day or plans for the weekend, how work is going, how my shots are going, what's new with the family. Just mundane stuff but it really means so much.

I am grateful for my Tramadol. This morning I couldn't bend two inches to the right or left and now, an hour later, I can almost move at my "new normal". I had one of those "wake up and can't bend over- feet swollen enough that I am walking like a weeble and hips just aching- boy does Rheumatoid Arthritis SUCK" mornings. I know that I have SO much work to do and thankfully- the Tramadol will get me through until Friday night.

I am grateful that tonight is Wednesday. I will take my Enbrel shot at lunch and tonight will be blissful, blissful sleep for many hours. Enbrel will give me a "punch" to get through the afternoon and then by 6:30 I will crash for the night.

I am grateful for Facebook. I spent last night tutoring my dad on Facebook. He set up the account all on his own and last night we just had fun with him learning how to use it. It is such a great social networking site. I have found friends that I lost touch with so many years ago and we have renewed those friendships. My sisters are both there, and it gives us a glimpse into on another's lives. Now dad is there too. Just another avenue to keep us all close.

Sometimes it is just the small things in life that make things so wonderful.

Tuesday, June 2, 2009

What a day~

I am definately overdoing it. I know I have for the last two days. My knuckles, ankles and feet are pretty darned swollen right now. However......I feel like I have accomplished SO very much! We have dismantled the first Summer Session, set up the Second Summer and started moving Fall books into place for 1/2 of the departments. That is HUGE this early in the summer.

Tomorrow I am dressing down and going to spend my day in the stock room working on the books we need to return from the first session and if I get that done- will start tackling the five pallets of books we have in the back for fall. At the end of the week- I know I will pay- but I have the whole weekend to recover. I am also thinking of taking off early on Thursday since I had to unexpectedly stay and close last night. Thursday is supposed to be a beautiful day. It would be a great day to come home and just plain relax. Everyone needs that kind of day once in a while.