Tuesday, June 30, 2009

My children, long ago - memories

Kay, Utah, October 31, 1972
We had just completed a tour of duty in Ankara, Turkey, and were awaiting base housing at Hill AFB. While there Bobby (later to be known as Robert) celebrated his 5th birthday. Nothing could deter us from having a birthday party for him, so after returning from school that day, we had a little surprise for him. Below are a few slides Jimbo scanned, and gave me for Mother's Day this year.

The birthday boy
Robert Sears "Bobby" Wages

Bobby and all of his presents.
Wonder what all they were?

The three:
Jimbo (7), Bobby (now 5), and Debbie (2)

The boys standing behind our new Volkswagen in front of the motel/apartment where we were staying, a really nice place.
We moved into our base housing in time for Jimbo's 8th birthday, and in time for the first snowfall on the day the mover's unloaded our household goods.

Sunday, June 28, 2009

Frozen face is stealing my smile

No.............! But pictures do not lie! In these pictures I was smiling with all the strength I had, and I could feel the resistance beyond my mouth. My checks put up a stumbling block, like a concrete wall, like my cheek muscles were trying to be forced beyond their will, and were pushing back. They would not move. It's at the white shiny part where I could feel it, but no amount of trying on my part could break that barrier. I'm so glad Debbie thought it was good, and even bought a frame for this one. Makes a mama feel good.

(Click on the pictures for a larger view)

I was more tired whenever we took this picture, and had even less control of my facial muscles, though I was giving it all my might.

So, what's going on? Why the decline? Shall we say missed IVIGs? April, May, June, and now coming up July? I am digressing, losing so much ground I have made over the past two years. The sadder part is that it was helping other autoimmune diseases as well. Looking at the larger views, you might can see the ruddiness, the broken complexion of my face, and the heightening`1 of my *butterfly* appearance of my lupus which has been under such good control that I frequently forget I even have it. But not now.

Mestinon, 60 mg 3 x a day is what I started out on three years ago. At that time I was also on 60 mg Prednisone, and today I am on 40 mg. Today I am on 100 mg Imuran which I was not taking then. In my opinion, I am back to square one, before starting the IVIGs, and thus am no where near finding the drug combination that will put me on to the road to a drug induced remission, of at least **some** improvement.

So, where is this going to take me if I do not speak up now? The only thing I know to do is talk to Dr. Diamond and let him be my advocate. I do not feel like I have one at this point. It is harder to swallow, and I am choking more easily. I plan to have Christa, my nurse, call Dr. Diamond tomorrow, plus I am going to print out the facts of the medications and worsening symptons. Just a little bit more, and I'm not going to be able to see much at all. Well, it is about to that pont right now, actually. Jim had to help me drive my chair while we were out Friday because I could not open my eyes wide enough to see, and was outside, but even in the store I could not see byond a few feet surrounding me, and that was out of focus (I'd sure like to go back when I could go more slowly and take my time to be able to look..... Melissa, are you there....big grin ;). There is always shopping online.

Thursday, June 25, 2009

Wages-Holland family night out

Brenda was here from North Carolina. Jim came up from Senatobia. Jim and Debbie drove over from Blytheville. We congregated at Outback Steack House here in Jonesboro. We had to wait a while for there to be a table large enough for the five of us, and while we were waiting, Debbie and Jim started taking pictures of each other whle she held her camera out in front of her. The *thing* nowadays. Then she started going around to each of us. Of course she was in each picture. Why not? After she finished taking pictures with her camera, I gave her mine so she could take some with it. At that time I actually thought I would be able to upload them later when I got back home, and post them that night, Sunday, June 21st. Little did I know what I had in store for me. First, we were there, laughing forever, and then when back home to the nursing center....CRASH! Actually slept in my chair for a while before creeping back into bed.

I'm just going to let the pictures speak for the evening, especially Jimbo and Debbie, and one or two of Brenda because she got quite tickled herself, though supposedly the adult of the three. Hmmm..... who could tell?

My perfect middle-age adult children

Maybe sitting on the other side of him will help

Back again....

Okay, how about with his Aunt Brenda

I have a feeling I'm being left out of something.
Are they talking about me, and laughing?

Tired, but it was sooo much fun!

Mama and Daughter
When did we get to be senior citizen and middle age?

All of us...
thank you to our server for taking this picture

There you have it. From all of us, to all of you! Hope our merriment, and good family fun permiates to bring some laughter and happiness into your life today. All is not perfect in our lives, and probably not perfect in yours either, but take a few moments to laugh together today if you can. There is healing in laughter. Yes, I was tired at the end of the day, but it was worth every moment to engage in fun and laughter with my family, our first time to be together like this in many years, and after cancer threw its threatening darts at us during the past two years. Brenda, my baby sister, battled and beat breast cancer, and Hodgkin's Non-lymphoma (now clean after one year....yea Brenda!), and Jim, husband, protector of 47 years, faced and is continuing to beat (latest PSA this past week we are waiting on) prostate cancer (he is at the year mark, too....yea Jim!). Both have been affected by their cancers true, and are having to make changes in their lives, but with support and understanding from the family, they are making it day by day, step by step. We each have our own journey.

Then comes another....baby Emma (getting into the picture :), whom the doctor says is strong and healthy, and may be here a week early. Hannah, Christen, and Jennifer will be aunts another time around. Another cousin for the great-grands in the lineage. More photo work for me. We'll welcome Emma Lee Moore late July or early August. ;-)

Bye for now from the Wages and the Hollands. Brenda it was sooo good to have you join us all the way from North Carolina in this meal together.

Neva div up!

Never give up!

Thursday, June 18, 2009

Making it to day two

Moving along to day two, Thursday, and improving from the urinary tract infection, getting a bit stronger as the day has progressed. I first had good news and bad news. My blackberry was found, however it had been through the wash! Yes, it was all clean. Question was, just how functional was it? I just laid it upon my covered leg, and went about my business. Later I looked down and saw the screen on. Picking my phone up, it was nice and warm from being on my leg and throw. There was limited function albeit only to the point in time of its splash into the water. Nothing new could be done, and no lights were working. Ringtones worked. We put someone else's battery on to it, and that was what got it to working so. That was all good news that it was probably salvageable but how long would it take, and just how much was it redeemable. It could take a while to find out. After a while it seemed the prudent thing to do was to get a new phone. I checked on E-bay, but then realized I was still looking at several days, maybe a week down the road of getting any phone I should find. Later, I sent a message to Jim on Facebook asking him if he would come over on Friday to help me rectify the situation. He said he will be coming over in the afternoon.

Any who are familiar with the drug pyridium will know that it turns the urine to almost red in color. Erin came in to change the patch that protects my right elbow from becoming a bedsore, and we caught up on the past few days' news. She didn't say anything in front of me, but upon leaving my run, she said to my nurse, "Have you seen the color of Mrs. Wages' urine?" We had talked of my infection, but she had not thought of my being on pyridium until Christa told her. Ohhhhh. Light bulb, eh, Erin. I'm sure it did give her some moments of concern, especially knowing of my hemorrhaging during my hospitalization.

While I was busy looking for pictures of Christen to print, a little gray sparkled head poked around my door, smile on her face. Welcome Tolice! And what a welcome it was!! How do we get into the conversations that we do? They are always so indepth. Surely they could give us a chance to solve the problems of the world. Bless her heart it hurts her to sit for an extended amount of time, and sitting in my chair is doubly hard. (Aunt Caroline, know what I'm talking about?) Tolice, I really appreciated your visit. Hope the poison ivy is getting better.

For those needing something more comfortable, I now have a soft high-backed chair for you. My roomate was moved to another room (what does that say about you if your roommate leaves just weeks after you move in???? ;-) when she returned from the hospital? Her bed had been near the air conditioner. She always fluctuated between hot and cold, having them turn it up or down. She also ended up with no cover over her many times, so there were probably several things contributing to her pneumonia. Judy, her daughter, was by to get her TV, and said she is not doing well at all. She said she has lost weight, and will not eat. I'm sure hoping for the best for her.

Myasthenia. Eyesight is really, really bad, worse in the past few days. Levaquin? I could see fairly well when printing pictures for Jim the other day, and the Levaquin is the only change I have had. Wait and see? Any other choice really?

Neuropathy. Feet and legs in much pain. We are trying a couple of new things. As Dr. Diamond said, we don't have much to lose by trying some things that are touted to help neuropathy pain. That's surely true. Even the pain med does not usually cut the pain.

Till later..........

Wednesday, June 17, 2009

I'm on my way back

Finally! If all goes acoording to plans.....ahrumph.....I should hopefully be back here in the driver seat once again. That is today, Wednesday the 17th of June, 2009, at 5:20 a.m. If nothing else, the past two and a half months has taught us that absolutely anything can happen to disrupt your plans. That "absolutely anything" did happen, but it appears the road back is before me. make no promises at all as I map out my plans for the future, for things have to be will have to be a bit different than before.

In addition to all of this, I am switching to a new computer. A smaller, much easier to handle one. I, even with my MG weaker arms, can usually pick it up with with hand. Right now data is between the two.

I am also doing my printing now. My printer lives in the bed with me. My scanner is just beside me. Dr. Diamond was very pleased with my setup here, and all that I am doing, keeping busy. The next time I am up, I will take pictures of my arrangement which really looks like a mess. I have a litle spot where I fit in with everything around me within arm's reach.

My pain med is on any every four hour basis now, and I work around that schedule pretty much. I have been sleeping more the last few days, much of that due to the infection I am dealing with right now. It is on the mend, and I should be seeing a return to normalcy very quickly now. It was quite rough for a couple of days there, and my Foley got messed up some how, not draining properly, causing my bladder to overfill, then causing bladder spasms. We switched it out yesterday about noon time, and got it to emptying normallhy again, and that took care of the spasms and severe pain. Then we got the pyridium started, and now along with my normal pain med, it is all MUCH more manageable. Jim was here throughout the switch, and he was able to see me go from bad to much better by the time he left, and I was glad of that. First of all I was just glad to have him here, but it was comforting to have him here during my period of trouble, and then for my being all better by the time he left. My frowns turned to smiles.

So, here we go. I have no idea right now what to expect from me, and I ask that you do not either. We are just going to see what we put together. For sure the road is not straight, clear, and uncluttered, but I can deal with that, and I hope that you can, too. It is important that I do what I must do to adapt to my new situation, plus I am still recuperating from all that I went through in the hospital. I'm doing great, but the body doesn't go through that much trauma, and snap back overnight. Again, Dr. Diamond was pleased with how I am coming along, and said with my body, with all that I have working against me, I am doing remarkably well. I thought so, but it was nice to hear my doctor say so, and really encourages me. He said we are in this for the long road, said for me to just set up here to make it feel like home, which I am making good in-roads to doing. My bed is my home, along with the wall beside me. Pictures, have I got pictures. Printing. I have printing ability to print anything I want. Just keep me in ink. That's all I need. ;-) Oh, and paper, but I have lots of that right now.

I'm excited. Let's just keep the infections far away. That seems to be my biggest enemy I face. The rectal ulcer can be managed with the pain med. Doesn't sound like good management maybe, but I can only handle so much treatment at a time....easy does it. There are still the kidney stones to deal with, too, but in time. Everything in time.

My sister will be here in just a few days. No words to describe how I feel about that.

My cell phone is lost. Happened yesterday, and I've got to do something about that today. Jim got the Suddenlink connected this week, and it is sooooo much better now to not get disconnected all of the time. Thank you, thank you very much!!!! As icing on the cake is a return to the good speed I had with the dsl. Things are working out.

Ken got me a King Biscuit shirt from Helena. Thank you Ken. I will wear it today. Your blue shirt is pretty, but red seems to be my color nowadays, and fits with me very well.

What I woke to:

Then Ken came over:

Till later......


Sunday, June 14, 2009

Going home

I really just do not feel like writing, but know I really have to, and should. Thursday. Thursday I had an appointment with Connie for my eyes. The last time I saw her was just before I got sick, and I never had my follow-up appointment with the eye infection. The main thing with my eyes now is just the dryness. She gave me some drops, mostly just some tears, and that should help with the crustiness that forms.

After my apponitment with her, we went to Benny Bob's and got catfish! Yummy! It was 'lishish. There was stil plenty of time after that until my appointment with Gina to get my hair done, so we went to the house.

Three little kitty cats. How would they react? As predicted, Precious came to check me out to make sure it was safe to have me in the house, and she smelled me over from tip to toe. Once satisfied, she went about her way, but did stay within proximity to provide backup if necessary. Jim put Callie up in my lap, her giving her special little "mew" whenever picked up. She stayed there, but I could tell she would rather be down, so I obliged her, letting her down. Anna Kay, seeing my lap empty then, jumped up. She offered her head for rubbing and massaging. It wasn't long until Darling Callie was curled up beside me on the chest next to my chair where she stayed until time to go to Gina's to get my hair done.

This was the first time I had been back home since leaving on April 5th to go to Jonesboro to St. Bernard's for my IVIG treatment. How did it feel? I don't know. Not good overall, but I don't think I can go there right now. I don't want to put my thoughts down.

I do not know what the status of my blog is going to be. Since being in the nursing home, I am unable to keep a connection using my cell phone as my modem. A service with Suddenlink is available, but seems not to be affordable. I will just post as I am able to stay connected long enough to upload my entries. It is just not worth the hassle I have to go through, so my internet time has already been dwindling down, and I am finding other things to fill my days. So is the life . . . . .

Tuesday, June 9, 2009

Myasthenia Gravis, looking at a child's face

As has been stated earlier, myastenia gravis is no respecter of persons, gender or age. Lewis Schofield' is a child with MG who has been resistant to all treatments, and is now getting ready to undergo a thymectomy in the hope of forcing a remission.

"After 14 months of fighting Myasthenia Gravis with all sorts of treatments and medications and after watching the rapid progression of this disease, Lewis is undergoing a thymectomy today, Wednesday morning, in the hopes the operation will force his brand of MG into remission.

Approximately 20 out of 100,000 individuals in the U.S. have been diagnosed with MG. However, only 1 child in 500,000 is diagnosed with Myasthenia Gravis.

Oddly enough, Lewis who also has Asperger Syndrome (a form of Autism) was diagnosed in April of 2008 during Autism Awareness Month and now, 14 months later, he is undergoing a thymectomy during Myasthenia Awareness Month. June has been Myasthenia Gravis Awareness Month for 9 years now as MG Associations around the world work to raise awareness of the often misunderstood and under-diagnosed disease.

This year’s theme is: “Uniting For a Cure… Together We Are Stronger.”

The thymectomy won’t cure Lewis’ MG but it might buy him some time if the operation forces his MG into remission. And if it goes into remission, how long will it stay there? No one knows for sure. It could be a few days; it could be a few decades. We don’t want to think of the other possibilities.

Never one to let something outrageous take him down, Lewis has spent a great deal of his time raising awareness of Myasthenia Gravis along with his efforts raising awareness of Autism Spectrum Disorders.

Before going in for his thymectomy, Lewis decided to create a special video to thank his real life and online supporters who have helped Lewis battle Myasthenia Gravis in whatever way they could. He joked around on the weekend that if he had been able to put everyone into the video, it would have been a 2 hour extravaganza to rival the Grammy and Juno Awards Shows.

A very special thank you goes to Andrew Gold who granted Lewis permission to use his song “Thank You For Being A Friend” in the creation of this very important video. No other song expresses so many of Lewis’ feelings towards his friends.

To watch the video, click HERE."

Elyse Bruce

Wednesday, June 3, 2009

Report from Dr. Cauli

Julia called Jim today with a message from Cauli that he reviewed my medicines, and said they were fine as is. WHAT GIVES?????? This is the amount I started out on three years ago before we changed to the extend tabs and IVIG. Am I to stay stagnant like this forever? I am not even staying stagnant; stagnating would be to die; I am going backwards. I guess I should be thankful for this nursing home. They will care for me in my MG decline, they will keep close check on my diabetes (good nurses: thank you Christa, Philyss, Sharon, Jessica, Emma, Christie, and oh the others I cannot think of all names right now, you are ALL great), and they will note my rectal ulcer with the bleeding, reporting it in the nurses' notes. Who reads the nurses' notes? Anyone? At least with my air mattress being put into today, I can say I am at least nice and comfortable. Phylis kept after dietary until they finally came to visit me and we worked out a plan for my diabetic diet. Not perfect, but SO much better. Erin, my wound care nurse looking after my thin, delecate skin, helping me get my much needed air mattress. The CNAs.....Certified Nursing Assistants (or Aides). I believe Patience is the primary virtue they must possess. Sure they must offer skilled nursing to us, very much like what I received in the hospital, but from my observation of their care of residents around me, they have to have a lot of patience. Wonder what the odds are that I would have a Sherika at the hospital and here, too? And, they are both good at what they do. Oh, I have just been so blessed with good nursing staff at both places.

I am keeping busy. There is still the Childhood Cancer awareness, and now this month of June is Myasthenia Gravis awareness. More on each later.

Some make fun of me here because of my *stuff* but I am set to start going through my photos, putting them into digital format. What do they expect me to do? Lay up here and rot? That's what I would do. Let them walk in my shoes. I have my faculties about me to be productive. It is only parts of my body that are out of sync. I see others that can do nothing but just lie there all day long. My heart goes out to them. One of them is my friend from school days. She is not able to do anything.

What would happen to me if I didn't have my *stuff*? Sleep? I could not get out and around right now because I cannot sit for long on my bottom, thanks to the ulcer. Just what would I do? I have done without things like photos and artwork for so long, that it is like Christmas to me whenever Jim brings something.

I am having trouble staying connected to the internet with the dial-up with my blackberry.....grrrrr, (dsl one of these days), so while I can, I think I had better upload this, but I will start another one as soon as this one is done.

Edit: This was posted at a later date than was written.

Monday, June 1, 2009

Prayer lighting the way

Upon the turbulent sea of my life, there is only one constant, and that is God through prayer. God is my only answer, and it is He whom I turn to, and know that all things are working together through Him whether I understand them or not. Whenever I give a big sigh, I do my best to turn it to Him, and not try to understand why. That is as it is this morning. My wants are not always deemed my needs I guess. Is "no" always from God? Just wondering. Do I sound mystique? Not meaning to; just don't think giving the details of what I'm questioning is prudent. I'm just saying I'm not sure we should always sit back and be passive. But..... I'm not always that good about being active either. I think waiting with more prayer is in order for today. Your prayers are appreciated, too.

Have a good day!