Friday, July 20, 2012

# 128 - Sharing the Soul

As a mom, I've diligently kept all of my daughters' art work from their childhood. Years ago, I made extra large-art portfolio holders by stapling two posterboards together, leaving the top open to slide in their artwork. This kept their work from being bent and creased.

In an easily accessible area, the portfolio was kept behind my china cabinet with the edge of the portfolio barely sticking out to make it easy to retrieve for adding new artwork to it.

Recently, I took a day to spread out some of their work and to simply gaze upon the beauty of each piece. I'm considering buying very large frames so that I can create a collage of framed artwork for each daughter; I plan to put these collages in the guest bedroom for everyone to enjoy.

I imagine, one day, when my children have children of their own, my visiting grandbabies will get a kick out of seeing their mommy's art, created when their mommy was a child. It will be a link from childhood to childhood.

Some of their work is abstract, other work is "still-art" and a few pieces reflect a historical event. Each one is precious to me.

Most moms love to get their child's artwork, but I can't express how excited I had been to get each drawing, each painting, each sculpture...I never wanted to buy any art because I had little artists living in my household.

To add to the art of my children, I have my own artwork throughout the house that I've produced for years and years, especially some larger pieces that came with studying Visual Arts and Design at the University of Houston. I've been blessed to work in the Arbor Building through many art classes and to have professors of great artistic standing be my teachers in specific art methods.

Obeying my own need to create art is a tremendous stress reducer for me. However, I had some serious health battles that would put a wall between me and my need to create art, especially the battle with being able to use my arms since they were not getting adequate blood flow. But, I had two major surgeries to better enable blood to get to my arms and hands, a two year process of surgical intervention that went into three-four years after they decided to remove my minor pectoral muscle on the right side since it was shredded by bone shards. Even if the major surgeries were horrific and came with critical complications, I'm happy that my left side works wonderfully, but my right side was never properly "decompressed" by the removal of my first rib along with the removal of the anterior and scalene muscles in my neck --- I also have artery clips along the thoracic arteries as well, both sides.

The surgeries had to be done a year apart. Each one required approximately one year recovery, mostly because of the collapse lung that each surgery left me to deal with --- because of a paralyzed diaphragm. The nerve in your body that is the "control wire" for the diaphragm, which controls the lung, well, this "control wire" was impacted by each surgery, so each side ended up with a collapsed lung following surgery. It would take about 9 months, each time, for me to again be able to inflate my lung. Let me tell you, everything done to me in the dice and chop operating room could not compare to the lung collapsing. It's not a good feeling when your lung collapses and you can feel the lung sticking to itself --- to inflate it, with each labored breath or with pulmonary rehabilitation causes tremendous agony.

My left side was surgically decompressed by this method in 2005 and the right side was done a year later, in 2006. Since I am still unable to freely use my right arm, it's an ongoing battle. Even the simple act of blogging can cause me trouble as the right arm goes numb and pain from the lack of bloodflow creates pain down the arm and a sensation of choking on the right side of my neck. It's a big price to pay, but I try to position myself the best way possible so that I can type, type, type. I can use my arm for a short time, but it's never felt the same since the days when I could use my arms without a second thought and that was ten years ago.

I guess this is another reason I've treasured my daughters' artwork. If anyone understands the desire to create art, to play instruments and to do things that are ordinary daily activities without a thought about anything other than "Which color to use next," or "Which key to play next?" -- I do understand having the burning desire to do such things, yet not be able to do them because of physical limitations. I also understand what it means to push past the pain, to keep going in spite of challenges. Sometimes I've paid heavily for those decisions, but I rarely regret it.

Good thing I have partial use of my right arm since the surgery, it is better than before surgery, but still not completely workable as is my left side. I can often work around my incomplete decompression. Maybe one day I'll have the luxury to have the right side fully decompressed so that I can do normal things again, like drive to see my daughter in Dallas without it being a huge undertaking that causes me major issues, such as being able to feel my arm. Driving requires limited mobility, a huge issue for me.

Yes, maybe you can see a little through my eyes as well that this artwork is more meaningful than I can express.

Living life as fully as you can means different things for different people. Some people are given every tool and every healthy benefit to be able to live a beautiful life, yet they still take it forgranted. My mindset feels that there are enough problems, day by day, for me to conquer; I certainly don't need to add any more problems to what I already face. For many, like me, just getting through their day is a personal battlefield that brings constant reminders that simple things can be great challenges.

Others seem to look for problems because it appears they need more drama in their life or they are not satisfied with having an "ordinary" life full of blessings that deserve focus instead of contrived issues stemming from owning an ungrateful heart. I've seen so many people create their own problems and these same people proceed to wonder why their life is full of problems?

Personally, if I have extra energy and physical capabilities, it must go toward the constant effort to keep my health balanced so that I may have that awesome day with a few minutes at the piano or to do simple basic tasks, such as the laundry and dusting the furniture. One thing I must say is that a good day for me can indeed be jam-packed; I've learned to fully take advantage of a good day, probably much better than a "regular" person without any health hurdles.

However, once my neck broke, in 2009, it required massive reconstruction and double-sided hardware to support the neck so it would not collapse again. To add to the thoracic artery issues, I found myself confronting more challenges on top of existing challenges. It felt like I was being sandwiched between major health assaults that I had no control over and I did feel squashed like a bug. For a while, I didn't feel very excited about the added loss of sensation in my hands due to a spinal cord injury. I didn't like the struggle to move my feet forward and to lift them to take a step...all of it took more effort than could be expressed, even to those closest around me.

The spinal cord was squished between two bones that had broken, so it damaged the spinal cord in a manner that could not be repaired. It created a large lesion on the C2 section of spinal cord that is still present and visible on MRI scans. Still, I regained more feeling and better use of my arms/hands and legs/feet than the doctors thought were possible. I've been given more than my fair share of miracles, even if I've been given more than my fair share of physical hurdles.

Through it all, I've learned there is something powerful about art --- it is a healing expression of humanity. I finally understood that for many people, especially for those who have suffered deeply from physical or emotional pain, a piece of art can seem to speak to you or for you. Art can capture a feeling, it can represent the best in you, the worst in you or it can bring hope beyond words.

For some dedicated artists, on any level, from novice to accomplished, there seems to be a sharing of the soul in some of the work produced by particular artists. Often, you can feel pulled into a piece of art. If you haven't had this experience yet, then I recommend that you view art differently. Try to search for a piece of art that truly SPEAKS to you with such depth that you feel knocked out of your shoes. It's out there, you might have just not found it yet, but when you'll know it.

I have a few personal favorites that definitely evoke great emotion from within the well of my soul.

In fact, I'll be scanning a few pictures of historical art that have brought me great comfort and hope during times of great turmoil.

But, there is a certain peace, joy and innocence that comes with looking at a child's artwork. It's like looking out a window to see a different view of sunshine.

How many times have I been delighted by these works of art created by my children? I can't count. Even through difficult times of their children created with bright goodness, always doing their best to get their mind's eye down on paper.

I love the effort. I love the result. I love the sharing of their souls.

Tuesday, July 17, 2012

# 127 - Focusing on Priorities

To follow up from the CTScan showing issues, I have an appointment with a "renowned" gastroenterologist in Houston's Medical Center that is with the Baylor Medical Clinic. The only problem is that it takes so long to get into one of his available slots, but I'm set for August 10th. Since I'm in constant pain in the entire abdominal wall, this will be an excruciating wait.

But, I can do it.

As usual, the biggest problem with an issue like this is to manage my Addison's. I am having a very difficult time getting out of the state of exhaustion; I just feel like I'm dragging badly.

To combat this, my doctor has increased my daily hydrocortisone intake another 10mg in the morning and an additional 5-10 every afternoon. Then, if I feel if I am still sputtering, I take control and administer more HC until I am feeling more stable.

I could have seen another doctor in my area sooner, but I've learned to not mess around with doctors who are mass producers and to stick with doctors who are better known for being in their line of work because they actually are diagnostically talented. And, I've learned to choose doctors who are connected to the hospitals I know practice higher standards of care and who have more capabilities at their facilities.

After you've done your part, the rest is in God's hands. All I know is that I have to be pro-active in getting myself into as healthy as a state as possible because the next big event coming in our lives around here is my oldest daughter's wedding in October. That's only a hop, skip and a jump away!

For now, until that appointment on August 10th, I have lots of things to do --- or to TRY to do! We are getting the house back in order since Stefie moved out to an apartment next to her campus.

Me & Stefie saying goodbye as she
leaves for college this year.

Things have been rearranged because of all the furniture we gave to her, in an effort to scale back our own belongings and to help her start her own life a bit easier, so now we can make things look even less cramped in this big house of ours. Hopefully, next week, the For Sale sign will go back into the yard and we'll get this big baby unloaded!

Another item on my agenda is my daughter's wedding shower here in the Houston area. That will be on August 4th and since I'm a typical mom co-hosting her daughter's shower, I have LOTS to do still. I hand-made all of her wedding shower invitations and this week I will be starting on the Alice in Wonderland themed decorations. It's been a lot of fun to cut, glue, glitter and print....makes me feel like I'm doing art projects for a really good cause! This is definitely a time when Pinterest is a source of beautiful ideas, even though I'm still lagging behind in how to exactly use this great site. I'm learning.

Heather & Henry

Heather's wedding is fast approaching and I'm so excited that I cannot express it in words how I feel! As far as Addison's Disease goes...I will DEFINITELY have to prepare myself to take stress dosages prior to traveling for the wedding and continue taking higher maintenance dosages to keep up with the physical strain and emotional strain that will be taking place in my body. There's just no way that this wedding won't have a huge impact on me...she's my baby! Even so, Heather has diligently taken great care to handle every element of her wedding and I'll be so happy to be with her the week of her wedding, to help pull it all together.

Heather & Henry - Engagement Day
I am so happy to be there for her...she's eager for me to help her with organizing for the wedding and for the honeymoon preparations since they will be traveling to Europe, and you can bet that I'll be cleaning house for her on a "mommy level" so that her and Henry can come back to a house that's without any worries. Her dad will be great as well, he'll help with ceiling fans and other things that I can't reach without a step ladder and I'm sure he'll be doing lots of cooking.

Together, we'll do our best to keep the two kiddos on track and to help remove stress from the days leading up to the wedding. I want them to relax and to focus on the sacred part of being married...kind of a quiet reverence for the huge step before God that they are about to take. We'll definitely be pulling the best part of ourselves together so that we can pray for these kids as they begin their marriage...for a mom and dad to work together to pull blessings over their children, I believe that says a lot and is critical for a young couple to get the boost to their marriage that is memorable and precious.

No matter what is going on within family dynamics, the important issue right now is that these two young adults be given every bit of support that can be reasonably given to them as they begin their marriage.

The good thing is, in the face of hard times, good times, I-don't-think-I-can-stand-it times, and the most connected times...both of these kids come from parents who have made it together, in spite of problems. Marriage is something that can't be discarded without major consequences and that is something you want to pass on to your children. Marriage is something that takes a long time to build, but can be demolished fast by doing unloving things and saying unloving long as they put the goal of being kind to one another as a priority, they'll find more joy together. I hope they get this concept down into their bones as they start their marriage. As long as they care about the feelings of their partner, there is a good marriage to be had.

It's a serious thing to have a's not an event to be treated like a party because it is so far above any "party" that can be imagined. Yes, it should be a celebration, a reverent celebration in the joining of two people as one in marriage while witnesses watch the moment the couple goes from single identities to two joined as one. A wedding day is a pivotal day to be marked in their history as a day that can never be erased. It's a day when a single person with an singular identity becomes melded by vows to another person in a manner that should last a life-time.

If anyone can do it, these two kiddos can. In my book, they've proved their love and determination to be together and to build a life together. Oh, there will be rough times ahead, but there will also be beautiful moments that will make it ALL worthwhile.

Yes, marriage is to be respected and to be honored from the moment the "I do" is said until the moment no more words can be said.

October 13, 2012 will be the day these two will be joined in Holy Matrimony. I will be honored, touched and overjoyed to help them get to the altar!

Wednesday, July 4, 2012

# 126 - Priorities in a Row, Creativity in Tow!

Here in Texas, it looks to be a beautiful day. It started out rough for me, but it's building into a better and stronger day that I hope to be able to enjoy as fully as possible. Deputy Dave has already been out since the wee morning hours enjoying whatever it is that he enjoys and it's good that he does.

I hope that later in the day, I'll be able to go out and enjoy my own company, in peace and to have fun picking out designer paper for my oldest daughter's wedding shower invitations. Heather is so creative that she's hard to beat with imagination for cute invitation ideas!

For me, I love everything I come across when I'm in a craft store, but that is a blessing in life for me, I am easy to please. It takes little for me to find a worthwhile smile. And I don't mind having a great deal of solitude because I am never truly alone, the Lord is always with me. Always.

Since this is my blog to relay things relating to Addison's disease, I must first start with saying that I've been struggling a long while with abdominal pains ranging from dull to severely sharp, the pain can pounce upon me within a few seconds and with little warning. I believe my regular readers are aware of this issue. It's been a challenge because I might be out and about when it starts to occur and that could be a problem. The pain gets so intense that I have no choice but to double over in pain, I break out in a profuse sweat that accompanies severe pain, and I only want to get somewhere to lie down and to be left alone. Thank God, I've been able to be alone during these times, except for when Stefie was with me during a direct episode last month. It's not a time l like to share with anyone. Of course, as the severe pains and stomach cramping begin, I immediately take a hefty oral stress doss to accommodate my Addison's disease.

Through all of these increasing problems, I did manage to finish my service as a Grand Juror Foreman, but it was tough. One way to get through these last few months was to barely eat during our day in session. I could lightly nibble on something, but a full meal would have put me in danger of going into a ball on the floor, so I never allowed the chance to happen.

A couple of weeks before our service came to an end, I went to get a CT-Scan of my entire abdominal region. I had the scan on a Friday, then my doctor went on vacation for two weeks, which was great because I wasn't in a hurry to hear the results. I already knew something wasn't right, but I wasn't ready to hear it and I didn't want the end of my service on Grand Jury to be impacted by distraction. So, I decided to not hear anything about it until recently. Waiting three weeks for the results was not particularly difficult.

Plus, my youngest daughter was going through her own testing to rule out the possibility of MS and she had another test last week, a brain MRI, that came out clear...I was celebrating her good results! However, I didn't want to get my test results in the middle of her own issues...I wanted to keep her first and to not jumble the madness, especially for my husband because he didn't need to get bad news about those around him at one time --- I guess that was part of my "selfishness!". The least I could do was to spread it apart on purpose. Thankfully, Stefie is a healthy gal! It gave me added peace to be able to focus on her scan and her results first. I cannot thank God enough for her being healthy. I can handle my own health issues, but to see your child suffer is to be in agony for them.

As for my own scan, my family knows I had this CT-Scan and had been waiting on the results. My dad, in particular, kept asking me for the results. He was impatient. He would have rather gotten all the news at once and he would've just dealt with it rather than having to deal with a delay. He's not good with delays and he loves me enough to be  concerned every step of the way. But, he understood my reasoning for putting my own results on the back-burner. However, he told me, "I know you are worried about Stefie as a priority over your own health, and I understand because she's your baby and she's my grandbaby, but YOU are MY baby and putting this off is not good."

Dads have a way of getting through to you.

Of us all, the delay tortured my dad the most, but I'm glad he respected my decision and tried to wait patiently. He lets me know that he's praying for me --- my father --- praying --- for me. You can't get much more love than this. He's rather persistent and very involved with my health, after all, I am his oldest daughter. For the past few months, he's even let me borrow his car because I've let my youngest take our extra vehicle to college. My dad did not think it wise for me to be left without a vehicle, so he's made sure to remedy that matter and I'm grateful. His vehicle allowed me to make my appointments to to take myself to the places where I would go for testing and check-ups. It's good that I have a car because I'm usually alone for these tests, and I prefer it that way. There's nothing anyone can do but sit and wait; I'd not want to bore anyone in this manner. Besides, I'm rather tough and can endure the pain and stress of these tests on my own, it's often easier to do without seeing someone else's face contort into sympathy. I always tell my sister, "Save it for the results...then we can face it together...a test is a time of knowing nothing, getting the results is the time I will need you to lean on!"

As for my dad, he and I have been through a lot as father and daughter, which included taking care of my mom together as she died. We are well bonded. My dad does not put forth mock concern over my situation in front of people and then behave another way behind closed doors...his concern is genuine and consistent. He and I have a true friendship. I trust my dad. His heart is truly tied to me as mine is to his; no matter my age, I will always be his child and it is him that I sometimes worry about the most when I must relay a bit of news that might be considered "bad."

Besides, he is easy for me to approach, on a good and bad day. So, I'm more likely to go to him on a bad day.

The best thing about my dad, to me, is that he sees me as a good person, even with my every fault. He doesn't see me as selfish, even though I am borrowing his vehicle for a prolonged period of time. He thinks the best of me and for that I am astounded and appreciative. He knows my motives toward those I love are truly deep and that I would work to the death to help someone in a jam. He's my dad. He understands a side of me that would love to blend into the wall as a wallflower; that would be a delight for me, but this path of Addison's and other troubles is what I've been given, so I do the best with it that I can. That includes being honest about the good and bad times with my outreach. I refuse to put on a mask of lies surrounding this disease with complications because I want others to know that they are not alone in their moments of suffering.

When you have Addison's or Adrenal Insufficiency, everything in your life affects your condition.

Well, yesterday I spoke with the Dr. and he faxed me a copy of my CT-Scan. There are some definite problems that will need to be addressed right away. The problem is, there are several issues and the Dr. is trying to figure out which way to approach it --- which one should be first on the list when we are worried the others might need to be first. We will be talking again tomorrow.

At least I know why I am in great pain --- that has been revealed.

Of the many angles we are approaching, one test will be a colonoscopy as the reports says that a mass cannot be ruled out and the walls of the colon are noticeably thickened, which could mean a few things, not any of them are particularly good news. Then, the problem reaches to my bladder which has lining that is evidently swollen as well with thickened walls. The Dr. said he was concerned that everything in this area is swollen...something rather widespread is going would be better if it were isolated to one area. But, like I said, it explains my increasing pain.

We discussed a potential hospital stay so that I could go through several tests within a short period of time instead of drawing out the tests for weeks, especially when time could be of the essence. I've already delayed getting the news of the CT-Scan for a few weeks, but now I must move forward with haste. I HATE being in the hospital, but this is one time when I might have to agree that it would be the most efficient course of action.

For those of you who have Addison's disease, you understand the problems that these battles in my body are creating. It makes it more difficult to manage the Addison's and this better explains why I've had sudden Addison Crisis symptoms over the past few months and am having a more difficult time keeping myself body is in a constant battle. As for the mass they suspect, I can almost feel something in that area when I lie on my makes me wonder if it is the mass that I can feel? It's over 4cm in size, which is getting rather intimidating for a mass and I know what that size would mean, if it were to be malignant. When I lie on my stomach, it feels as if a hard golf ball is beneath me. Sometimes, I even check beneath me to see if there is something actually there in the way. There is never anything that can physically be moved to make the lump disappear because it's stuck inside of me. I guess we shall soon find out.

One huge issue is that I've completely lost my appetite, yet I force myself to eat every day. I try to eat two meals per day and to make it calorie rich so that I don't get into an Addison's wasting situation from the constant stress the issues are putting upon my body. Oh, I've got some "power pounds" on me so I am not very concerned about a sudden, rapid dip in weight loss...I've been good at keeping the padding in place. But, I am about 10-15 pounds less than I'd been last year, it seems I've leveled out, yet again. For me, having a stable weight is a good thing. Being skinny is not desirable. For those of you who suffered with rapid wasting due to Addison's, you understand this dilemma. I don't need to add a wasting problem to the other issues, so I am good about eating. Unfortunately, for the past several weeks, I have been so nauseated that I cannot get through my day without starting it off with Zolfran to control the nausea. At least I have this medication and it works fairly well to ward off major bouts of nausea.

Anyway, I keep going. There are plenty of people who have worse problems and they manage to keep moving forward. I will keep moving forward and doing all that I can in spite of these hurdles. I have had many challenges, but I've also had many MORE blessings. So, I can't feel abandoned by my Lord...he has seen me through some of the most difficult times. I have faith that He will be with me through all my days, until the end, no matter the age I am when the end might find me.

I am thankful to be surrounded by family and friends who are true supporters, even in the worst of times. Those are my true friends and you know who you are.

I will try to make more regular posts while doing all I can to heal my body because I have too much to look forward to. My daughter's wedding in October is such a huge event...I will do all I can to be in the best condition possible for that beautiful day.

There is much for me to look forward to. In spite of other areas that are disappointing, I am focusing on those whom I love dearly and focusing upon those who truly love me. Letting go of former friends who have turned out to be very unfriendly has been a treasure and a release. Those with mechanical motivations have lost their gleam for me...but it makes me better focus on all the other areas that are rich with blessings.

I'm sure a lot will be happening over the next week, I'll keep you posted! Meanwhile, I'm working on designing my daughter's wedding shower invitations that are looking as if they will be SUPER CUTE! It's wonderful to be able to focus on such things during times of personal hardship. I love the goodness in life that distract us from the ugly parts; I appreciate those who offer encouragement and kindness, at all times, not just during the scary times. I value my true friends who are eager to think the best of me, even in my worst moments.

It's great to also have such awesome blog buddies!

Thank God for good things in our lives!

A Couple of Months Ago