Saturday, November 27, 2010

Gobble! Gobble!

No matter how much I try to sneak some new dishes in each holiday, the kids refuse to give up their stuffed eggs. Grace had the pleasure of making them this year and they were mmmm...mmm..good!

Aaron is our picky eater. There are only a few items in the whole wide world that he will eat. I remember when I said I will never have a picky eater and then, we got Aaron. Never say never....! A round of corn dogs for his special Thanksgiving meal and he was one happy kid.

Some people got a little nap before dinner. I know...I know...usually that happens after the yummy meal. Guess we are resting up so we have lots of energy to partake of the feast! Don't worry about the drool....he's only dreaming of the Turkey and double layer pumpkin pie!

Look who's cookin??!! Don't you just want to gobble her up?!!

Happy Thanksgiving, Everyone!

Tuesday, October 26, 2010

Friday, August 20, 2010

Living with Chronic Pain...

It's hard to know what to say. We are struggling. Some days are tough to get through. Some days are not so tough. Mostly I just feel helpless.

Bob has been through test after test after test, treatment after treatment, after treatment. The doctors are scratching their heads at the results. Nothing is really coming back with anything that is explaining the debilitating pain that he is in daily. The only real evidence is that he has eleven damaged disks in his back which were not giving him trouble till he started physical therapy last Fall. It doesn't explain the pain he experiences day to day in other places for the last three and a half years.

This last treatment they tried was to see if they could do a nerve ablation. In order to do that, they injected steroid shots in the area where they thought would be the nerves that were giving him the most trouble. It didn't work as the doctors suspected since the previous steroid shot treatment didn't work earlier this year.

From what we understand at this point is that what the doctors are suspecting is that when Bob had his gall bladder surgery, it disrupted his nervous system for whatever reason and now it is just misfiring. They see this in some people who have had surgery. It leaves them in debilitating pain. You just don't know how your body is going to react to a surgery.

This debilitating chronic pain could morph into a fibromyalgia state which we've kind of seen. His pain started in the gall bladder area and ran along that nerve that runs across the bottom of your rib cage to pain in his back, pain in his arms, pain in his sides. It's just pain....awful, awful pain. He wakes with pain, sleeps (when he can) with pain, eats with pain, lives with pain. It never ever goes away.

The deeply disappointing news is that there is no cure for it. For Bob, this means a life of pain management. We knew it could be a possibility but still held onto hope that there would be something they could do to fix it so that he could have some relief. It is a devastating blow to hear the reality that that is not going to be the case. That for the rest of his life we are going to be living with this. I say 'we' because this doesn't just affect him, it affects our whole family.

It affects how we start our day, how we do things, how we go places, how we go to bed for the night, it affects everything and every moment of our day as a family. It is hard for people to understand as it isn't something you can see until it builds up to a debilitating level which it does throughout the day based on his activity level or just because. Sometimes he crawls into the house after being somewhere because I can't carry him. Sometimes, he can't cut up his food, pour his coffee or take a shower. It's a very humiliating state to be in.

In spite of our recent eviction notice, our recent denial of disability for the second time, and facing the recent reality that this isn't curable, we are holding onto God, the One who created our bodies and knows our every pain. I am holding on to the promise that He will restore the years the locusts have eaten (Joel 2:25) that He is a strong tower (Provers 18:10) and He will provide what we need (Matthew 6:25).

Don't get me wrong, we've all experienced major frustration, deep disappointment and even anger. I've thrown my own set of temper tantrums and experienced doubt. Then I've had to quiet my soul and ask for forgiveness. God knows all of our thoughts even before we know them and yet, He still loves me, He accepts me for who I am and is deeply concerned about me.

I have to remember that His ultimate purpose in all of these trials is for my good and His glory. Not the kind of good I think of because to me that is all about my comfort here on this earth. His kind of good is all about the state of my heart spiritually. We are suppose to be becoming more like Him, less like the selfish me along with my faith being developed through tough times (James 1:2-4).

I am so thankful for the whispers of encouragement He sends through His people, for His unconditional love, and knowing that I don't have to try to 'do' this on my own. He promises to never leave or forsake us (Hebrews 13:5).

Wednesday, August 11, 2010

A Day Of Learning

We recently took a trip to the zoo. This takes a bit of planning these days to do things like this especially with a crew of this size, six kids, two adults, stroller, diaper bag, cooler, etc. One wonders if maybe they should put the car top carrier on for such an occasion.

Upon arriving at the zoo, we noticed a sign for members only pointing to a special west entrance for just those special people. We thought it would be an excellent idea to use this entrance as there weren't as many people and you could park really close making it easier for Bob to get to.
One of the requirements for us to enjoy our time at the zoo was to get a scooter for Bob.

Upon unloading the van and all of it's contents, we began our journey into the zoo. We found out that at this special entrance, there were no wheel chairs, scooters, wagons or other such equipment available to make the trip through the displays easier. We had to make our way to the very back to rent the scooter. Bob thought he could make it so we continued on....

After making a few stops at various animal displays on our way to the back of the zoo, I noticed that we were losing Bob. He began to hurt pretty bad so he was slowing down to a crawl. I realized he wasn't looking to good, he was really pale but he was smiling. I think he was just glad to be doing something with us instead of being stuck at home. You don't realize what a blessing it is to be with your family and to be able to do things without hurting so when life events occur and you have it to deal with, you push and fight to regain just a moment of that in the midst of your struggles.

I did have a brief moment of panic though. I thought we were going to get stuck in the middle of the zoo with him not being able to move. I wondered what I would do with the baby and the other children while trying to help him. I realized that we can no longer just go do things randomly but have to think about things like: Is it handicap accessible, do they have medical personnel on board if needed, do they have scooters at the entrance, how far is it, etc. We even have to think about the car ride there and back. This being our first big family activity since Bob got sick was a bit of a comedy of errors. We will know what to do to make it easier and better for all next time.

By taking small breaks and walking very slowly we managed to get to our destination only to find out they didn't have any scooters available at that outpost. Sigh. The attendant must of suspected he wasn't doing well because she called up front and insisted that one of the security guards drive the golf cart to the back to pick Bob up and take him to the front to pick up a scooter.

The kids had a lot of fun even though we wasted much time just trying to get the scooter. They enjoyed being driven around on the scooter. I think that was a highlight for the younger ones. The other highlight was the spray misters they have throughout the zoo making it more bearable on a hot day. I don't think the zoo intended those to be used to soak oneself but hey, when you are a kid, soaking yourself is super way cool.

I am looking forward to our next trip back there hopefully in the next month. We will know better how to handle things, therefore, giving us more time to see more of the animal displays. Sometimes life is all about handling new situations with grace and that is what we are trying to do. In the process, it makes you more compassionate for those who struggle on a day to day basis.

Thursday, August 05, 2010

Ryan's Big Day

We recently celebrated Ryan's big day! He is now nine years old and is glad about that. Nine is a fun age to be. One of the things he absolutely loves is animals so a trip to the zoo was a perfect idea but it had to wait until the next day due to the weather. Ryan is absolutely thrilled that his number nine birthday is finally here because he is a man now. Arm pit hair is just around the corner as this is something he is looking forward to. Why do kids always want to grow up faster than they are?

One of the highlights of the day was the downpour of rain that made ginormous puddles in the parking lot which we zoomed through with the car making huge waves. This apparently humored him to great lengths. His older brother ran through them soaking his shoes and shorts which left Ryan not wanting to be left out of that fun. It became a fun sport between the two of them and as I watched them enjoying their rascally moment, I tried not to think about the wet shoes. They'll dry, right??!!

One of the items he wanted for his birthday was a paddle ball so we went on the search. I didn't realize how many stores I would have to go to to find such an item. Believe it or not, we finally found it at the grocery store. Crazy. Perhaps now he'll practice hard and become the world paddle ball champion which is his goal. Ah, I love that kid.

He wanted bratwurst and lemon cake for his special dinner and that is what he got. All in all, it was a fun day with a very fun boy (I mean man).

Happy Birthday, Ryan!

Friday, July 09, 2010

A Trip to the Slurpee Shop

Many moons ago, I implemented a reward for my kids during their potty training expeditions. The disclaimer was that it wasn't for 'peeing' but for the big one, the one that makes a mess and stinks really bad. If you know me, you know how much I hate poop. So it is worth every penny and my time to take them to the local 7-11 for a lusciously cold slurpee that consists of a sample of 40 flavors just so they will have tons of encouragement to put the poo where it is suppose to go.

Now in theory, my plan was to take them once a week but somehow it got all scrambled up in their minds to where they think this should be a daily occurrence. In a perfect world where sugar isn't an issue and neither is my bank account, that would be fun but reality is reality. We shoot for once a week but sometimes life is busy and we don't get there for two.

With all that has gone on over the last year, we've had some hurdles to overcome with our now four year old. She is now potty trained. It took about 2 days and boy, does she love the slurpee reward! So off to the slurpee shop we go. However, I have an 8 year old and a 6 year old that think that reward was instituted for life. Since everyone has been extremely helpful this past week, I took three of the younger ones all at the same time.

Now boys will be boys and once we got to the 7-11, they bolted out of the car like a bullet. This is not what they are suppose to do but the desire for this cool treat must have erased from their minds, the rules we have in place. I must admit that it takes a few minutes for my four year old to get out of the car. She has to unbuckle her seat belt, then she climbs in the driver's seat along with taking a few minutes to inspect everything. You just never know what treasure you'll find in the car. She has to come out my side of the vehicle every time. Why you ask? Because she loves me and she wants to go wherever I go. Waiting for her just takes too much time for two rascally boys.

Did you know that it's very hard for a four year old girl to make a decision on what cup she wants? While I was trying to encourage her to decide on one, my 8 year old had grabbed his cup, placed the dome lid on and had placed his under the blue slurpee spout turning it full on. Blue slurpee spurted out everywhere. I mean everywhere...on the floor, filled the disposal tray under it, coated the top of it and covered his hand that was holding the cup..did I mention the floor?? Do you think we were the only ones getting slurpee's? No, nope, noway. There was a line behind us because everyone else had the same idea of taking their kids there. I could almost hear the 'sigh's' escaping the mouths of the parents behind me. We almost got ran out of town!

After I cleaned up the mess, apologized profusely to the line of people behind me, got the kids their slurpee treats, reminded them about waiting for me and not leaving my side, we paid for these delectable treats and managed somehow to get back in the car. All of the sudden, I was feeling very, very tired. What if I curled up in the back seat for just a few moments. Do you think anyone would notice me sucking my thumb?? Instead, I opted for driving these cute little ones home. As I looked in my rear view mirror, I saw lots of smiles and heard lots of giggling as they were sucking down their treats. I see why God made children so cute. They can turn your clenched teeth into a laugh very quickly. Their giggles were my reward! I can't wait till next week....

Saturday, June 26, 2010

A Temptation Too Great...

This past week, we had some beautiful weather. It sure seems like a waste to just stay inside. So I got rather ambitious and loaded all six kids up in our van and headed on over to the park. It was my first adventure with all six of those cute little people...well, some of them are not so little anymore but taller than me.

The thing about kids is that they come with stuff like one wanted his scooter, one needed a stroller, one wanted her precious animals (the stuffed kind), and this goes on and on depending on the particular moment and the particular child. Let's not forget the diaper bag, the camera, drinks because you just need a drink when you are at the park. By the time, you load everyone up and all this stuff, you feel like you need a trailer to hitch onto the back of the car. It really truly is an adventure just getting to the car.

So we get to the park and everyone bolts out of the car much to my frazzlement (yes, I know that is not a is one in my own personal dictionary though). Trying to keep them all together and not let them run around in the parking lot or disappear into the park before I know where they were was my first encounter at the park that day. Actually, at that point, I truly had had enough fun for the day and we could have just packed the van back up and headed home. I would have been satisfied that we did something...together.However, that would have caused much distress to some of my kids since they had their little hearts set on exploring the world at the park.

So my next brilliant idea was to go check out the fountain at the back of this park before we got settled by the slide. We've been here once before but I never got past the playground. I heard the fountain area was very nice and wanted to see it for myself.

Let me tell you...I should have known that whether it be a mud puddle or a beautiful fountain filled with calls to my children. It doesn't matter that the sign says 'stay out of the fountain'. The temptation is just to great and before I knew what hit me...I had three kids playing in the water drenching themselves from head to toe. Do you think that in all the stuff I brought, that there was anything to dry off with. Of course not!

All and all they had fun splashing around in the water and Ryan was pleased as punch that the 'park people' didn't yell at him to get out. Perhaps, I looked like a frazzled mother and they felt sympathy for me or perhaps, they saw all the kids who were also as tempted as mine on such a warm day and decided not to say anything. I personally probably should have made them get out but they were having so much fun and I was glad for something to entertain them besides me. I do think that making a park and placing the fountain so close to the playground where the temptation is greater than the strength children possess is just too much to resist. I mean, really, who planned that one???

Needless to say, we never made it to the slide or the swings. The younger ones now refer to that park as the 'water park' and cannot wait to go back. Should I send a note to the 'park people' to drain the fountain before we come or should we just let it be is the question of the day. I think Liliana had the right idea. It was a great day to take a nap! If only she knew what fun she missed...

Friday, June 11, 2010

Welcome Home!

Our third birthday celebration for May is the birth of our newest child, Liliana Hope Marie. She is perfect right down to her toes.

I am so thankful to God for the last nine months. In all that we were dealing with surrounding Bob, God gave me the strength to not only have a very healthy pregnancy but also to help Bob through his health struggles. I won't lie, it was tough. It's hard on a normal level to be point person for someone who needs help with their care, for five children and to be pregnant on top of it. I felt God's precious grace the whole time.

I ended up having to be induced. Not something I was overly thrilled about but I have never carried a baby past my due date. This was a first for me as I am usually 7-14 days early (which I was counting on). God answered many prayers for this little one and for myself:

At 37 weeks, we found out she was breech. Surprise! So a C-Section was scheduled. We had many people praying especially all those lovely ladies at 5 points church. Bob had laid his hand on my stomach and prayed over me the night we found out she was breech. Two days later, we went in to another ultrasound and she had totally flipped around and got herself in the right position. The doctor was so amazed. He said he just doesn't see that very often. I will never forget the look on his face when we gave him the news. He called the hospital to get confirmation of the ultrasound and then, canceled that c-section. We know that was God!

I was very concerned with how I was going to get to the hospital should I go into labor. Who is safer to drive? A woman in labor or a man who is on narcotics for pain? God worked that out even though being induced wasn't what I wanted. At least, we were both at the hospital before either of those concerns where an issue.

While in labor, she was posterior but by the time she was ready to be born, she, again flipped around and came out just the way she was suppose to. Again...God worked that out.

And finally, one of the concerns I had that gave me great anxiety was Bob. I prayed and prayed over the last few months for him. I worried about how he was going to get through labor and delivery as I know he has very little time between pain medications that provide any amount of relief. I worried that he was going to be curled up in the fetal position in the corner while I was giving birth to our daughter. I even worried that he wouldn't be able to be there. But God provided a miracle. He overdosed Bob on HIS grace allowing the pain meds to work longer and allowing him to be there for us. It was a true testament to the power of prayer and God's sufficient provision. God is amazing and I thank him over and over again when I think on the events of that day. Not only did God give me the gift of my husband but he also blessed me with another amazing little child.

Welcome to our family, sweet little one...

Thursday, June 10, 2010


Our second birthday celebration in May is for our oldest. He is now 15. I have to keep reminding myself just how old he is because I just can't believe that that much time has gone by since I had my first child. If only you could slow time down just a bit....

Unfortunately, birthdays, holidays, special days all come whether you are financially ready to celebrate them or not. I am afraid this birthday was a bit of a disappointment as he had big plans for how he wanted to celebrate. He decided that his birthday is on hold for now until we can get to where he wants to be in order to do what he had planned. I am hoping he isn't still waiting when he's 35.

I think it's harder to come to terms with life situations as older children. The younger ones are somewhat oblivious to their parents financial struggles and are more easily pleased with the little things that we can do for them. It is a tough place to be in as a parent because I am completely disappointed myself in what I couldn't do for him. My heart breaks every time a situation comes up like this and I have to tell them I just can't meet their wishes.

On the flip side of that, it is a good life lesson. Life doesn't always go as planned and sometimes we have to adjust and come to terms with that. I'm still learning that myself. It's not a lesson I like to learn. I want to be able to do what I want and it's difficult to not be able to. We have to be very careful that we don't let these disappointments fester inside us and turn into bitterness and hatred, growing our hearts cold.

I know that birthday presents and going out to eat are all superficial things. These things are not what we live for. However, I think it's alight with God to enjoy those things as long as we don't make them our central focus.

The one thing that we are rich in is the love we have for each other. I know to a 15 year old, that isn't what you are concentrating on and it's hard to keep everything in proper perspective.'s the truth. Love is what we have to share....the love of Christ in us and the love we have for one another. I hope and pray that someday my kids will all look back on this time and see that shining brighter than all the pain and struggles we endured....that and the giant chocolate chip cookie we had instead of a cake.

Friday, June 04, 2010

Turning 4

May is a busy month for us. We now have 3 birthday's to celebrate. The first one being our Kara, who is now the big '4'. On the day of her birthday, Bob asked her if she felt any older and she told him she felt like she was 11. Should I be worried??

We asked Miss Kara what kind of cake she wanted and her choice for this year was pink cupcakes with pink frosting. That was fairly simple or so I thought. Have you ever had a 4 year old 'helping' you? The pink cupcakes were a hit with her. However, the next day she asked me when her birthday was. So we talked about how she had cupcakes the day before. She looked at me with a puzzled look and informed me that was not her birthday because we didn't have a round cake. Either she was trying to get a second birthday out of the deal or she really thought she should have a round cake and pink cupcakes. Maybe next year I'll get with it.

One of her prized gifts was a Cinderella polly pocket. It came with Prince Charming, a carriage and a pony. I had thought this was a great gift for her considering the fact that she was asking for a pony for her birthday. Earlier this year, she had been asking for a dragon and a puppy until her brothers informed her that dragons are fire breathing creatures. She decided she didn't want the puppy burnt up so she changed her birthday wish to a puppy and a pony.

She was a bit disappointed in the polly pocket set because the carriage would only hold Cinderella. She asked me why they didn't make it so both her 'guys' could fit. I was wondering that myself. Perhaps, we should send a suggestion to Mattel.

Unfortunately, Cinderella didn't last too long. Her 'boys' (brothers) got to playing too rough with her new present and popped the head off of poor Cinderella upsetting one new four year old. The hilarious thing was that she decided to play with the headless Cinderella until her mama could get to the store to get her a new one. So we have this headless polly pocket toy in our possession which I don't dare throw out until I can get a replacement. We talk about how this is going to get rectified daily. She never forgets and is always willing to remind me....just in case, I forget.

Saturday, May 08, 2010

More Tests....

It's been a whirlwind of a month full of doctor appointments for Bob and I both along with more tests for Bob, the final countdown for the baby's arrival with a sprinkling of kid activities thrown in there. Just reading that makes me tired, for sure. I am not sure how we fit it all in but there it is....Life.

We got the results back from Bob's EMG test and everything looks good. This is frustrating and it is awesome news all wrapped up into one neat little white sheet of paper explaining all this from the doctor. We very much want to find out what is going inside Bob's body but at the same time are praying so very hard that it is not something terminal while trying to maintain some kind of hope that it is curable. Since we still haven't any answers and considering Bob's pain level when getting that test done and the result being good, the doctors, who are scratching their heads in disbelief, prescribed a myelogram test.

It is not a fun test to have especially when you are in severe pain constantly. They remove a small amount of your spinal fluid and inject same amount of dye at the base of your spine. Then, while you are laying on this table with handles to hold onto, they tip your head down to let the dye run from the lower spine all the way up. During this process, they take lots and lots of pictures.

In Bob's situation, they injected the dye which decided to just get caught in his lumbar spine and stay there. We now know it's because he's got some bad disks in that area along with some arthritis which makes it more difficult to get the dye past. After repeated attempts of trying to get the dye to move on up the spine, they were somewhat successful but the poor guy was put through the wringer to get this to happen. As he was lying on the table crying, the doctors were trying to decide whether to proceed any further to try to get it up into the C-Spine area which is the neck area. They decided not to.

After they completed the test, Bob had to stay in the hospital for several hours to monitor the spinal area. Spinal fluid loss is just not a good thing. He was released to go home later that day with strict instructions to do absolutely nothing. You do not want the puncture in the spinal area to break open. So for 48 hours, I watched for any signs of leaking and had to become the armed drill sergeant to keep him from trying to do anything.

He didn't do too badly for the first 24 hours except for a bit of a headache which they said was normal. However, by late evening and early morning following that, his head was hurting so excruciatingly bad that I ended up taking him into the ER. Apparently, the fluid can leak into the muscle tissue and not be visible to the eye since it's leaking on the inside which was what was happening to Bob. He had a spinal headache that was making him throw up. They did a procedure called a 'blood patch' which provided relief in just a short period time. After a couple of days, he started up with another headache but not quite as bad this time. This is apparently normal also as your body is trying to rebuild the lost spinal fluid. Definitely, not a fun test to have.

We saw the doctor yesterday regarding the results of the myelogram. It showed that in the lower spine he's got some arthritis and disk herniation along with a couple little spots of spinal narrowing but nothing that should cause him this severe of pain or any of what is going on with Bob. Since every test he has had is coming back mostly fine, the doctor wants to revisit the idea of Fibromyalgia. There is no test that can confirm completely that is what is going on. It is a process of elimination. His symptoms kind of go along with that theory. They have him started on a new medication to see if it helps. So they will be testing that on him for the next few weeks to see if there are any changes.

In the face of that diagnosis, we are dealing with some disappointment because there is no cure. Just as we have for the last three years, we are trying to find a way to function, to live and deal with the debilitating pain that has become such a part of our lives. To come to terms with the fact that was once normal may never be again. To trust God with it all and allow Him to make some kind of good out of it. We have to put our lives, the lives of our children, our hopes and dreams and plans in the hands of God.

It is very difficult to give up what you want and to trust God with it all. My independent spirit wants what I want but God wants us to want what He desires. If we can somehow let go and let God do what He does, this whole situation will turn out amazing and glorifying to Him. It's my own selfishness that gets in the way and prohibits God's plan. So once again, I come before the Lord, giving it all to Him and am desperately trying to leave my hands off it. He has promised us HOPE and a FUTURE. He will restore us maybe not as we envision but as He has envisioned and known before time began.

Jeremiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Tuesday, March 30, 2010

The Pain Patch

After the whole fun trip to the social security office with a side trip on the way home to the emergency room just to kick the weekend off with a bang, we were able to make an emergency appointment with the pain doctor for the following Monday. It was an agonizingly long appointment. But don't all doctor appointments seem agonizingly long when you don't feel too swell?

A visit to the pain doctor usually is long. They have to ask lots and lots of questions as to how you are doing since your last visit. What kind of pain brings you in there to see them and so on. This you have to tell to the first nurse and then the nurse practitioner and then the doctor. As Bob is laying there in agony, I have wondered if it was possible to round up all three and have them come in there so we could do this all at once. Or maybe we could just record it and they could go over it later? I guess that is not their policy. I thought it was a good idea.

After going over what happened at the disability appointment, his overall pain levels and the concerns our family doctor has as to the effects debilitating pain has on the mind, they gave us two choices. One was a pain patch that has to be changed every 72 hours. The other was morphine. We chose the patch or should I say I chose it on his behalf. By the time we got to this part of the appointment, he was in too much pain to make a conscious thought or decision. Kind of like when we were at the ER and the nurse asked him what his pain level was at and he told them...ah, a 6 or a 7. The nurse then looked at me and I said how about we try a 12. The nurse said that she'd go with my answer since it seemed more in line with what was going on.

He also is having an awful time with his balance. His pain levels are throwing everything off including that along with some of the medication he is taking. The doctor's office was offering to prescribe a walker but Bob isn't ready to go that route right now so we opted for a four prong cane. There is nothing about what is happening to him that isn't frustrating and somewhat humiliating. It's hard when you are at a point in life, when canes, walkers and narcotics are not where you want to be or should even be. To not have any real concrete answers as to why just adds to the weight of the whole situation. There are some other things that the doctor could try to ease the pain if only we knew exactly where the source of pain is coming from. For now, those are on the back burner.

He's been on the pain patch for a couple weeks now. They are hoping between the patch, another narcotic, a nerve blocker and an anti-inflammatory, that it will help him at least have some relief. It has helped. It's brought the pain levels down a notch enough to let him sleep more than he was, to get around the house in small doses and to be able to take a shower without help. However, he still has awful periods of pain off and on during the day which they warned us would happen. We have another visit to the pain doctor in a couple weeks to which they will determine if they need to up the dosage on the patch to the next level. So far, I'm thinking they are going to have to. While it's helping, he is still not able to do a whole lot.

He's hoping that if they could just get the pain down lower, he could work. That is so heavy on his heart. His not being able to provide for us has been one of the worst things about this whole situation. We continue to pray for his healing. That God will bring that about soon but we also know that God has a plan and a purpose for all of this.

We both want to share the hope of Christ in even the most desperate situations that we face. It's hard sometimes. We've experienced despair, discouragement and moments of hopelessness but we know beyond all that, God fills us with the grace, the strength, and the courage to face each day as it comes. One reason we are able to do that is due to the prayers that are going up on our behalf and the spiritual food we are constantly feeding our souls. How could you survive one moment of affliction or trials without your eyes properly focused on the One who is our source of strength, our source of courage and on the One who gives us life? When my eyes lose that focus, that is when I fail to function in hope, courage and strength.

If you are in a desperate situation, remember that God has not forgotten you. He has his eye on you and will not let you go. Seek Him with your whole heart and hang onto to him. He is the only way, the only truth and only through Him do we have what it takes to live this life.

Wednesday, March 17, 2010

A Day at the Disability Office...

This past Friday we had an appointment to file for disability. We had previously filed awhile ago but were denied. They don't like 'pain' as a diagnosis. We could have appealed but needed an attorney which we couldn't afford and didn't know who to go with along with the fact we were scrambling to find a place to live and pack the contents of our home. So here we are again....

We visited with a lawyer recently to discuss just exactly how to go about all this and to seek some advice. He suggested we just refile and then, he would help us from there. He was pretty confident that we had a great case for filing as anything that requires Bob to attend outside of the reclined position is excruciatingly painful and leaves him curled up on the floor in a sobbing mess. The lawyer saw this in action firsthand. This is so humiliating for him but hasn't much control over it when the pain is that bad. The hard part is me getting him to the car when he's in that position.

We had previously filed online but the lawyer told us that we needed to actually go into the office so that claims person could see for herself what kind of shape he was in. I guess they have a list of mental evaluations that they make while you are in the interview. So this is what we did. We went into the office and filed.

It was a horribly long, long interview as they gathered any and all information. After about the first half hour, Bob was incapacitated and absolutely unable to answer any of the questions to which I ended up finishing up the interview for him. At some point, Bob was on the floor hunched over holding his cane sweating so badly that his hair and shirt were absolutely soaked just trying to maintain breathing that the security guard came over asking us if we needed an ambulance or medical attention. We thought if we could get him into a different position that might help so the security guard tried to help him by grabbing onto his sides which are an area of extreme pain. This just catapulted him into more pain. I felt bad for the security guard. He didn't know and felt awful about it.

Periodically, the security guard would walk by and check on him along with some of the other workers. We finally came to the end of the appointment and it was time to get to the car. It was a long, long walk to the car and I had an awful time trying to get him to it. He's so worried that he's going to hurt me or the baby but we try to manage as best we can. I couldn't leave him there. I don't think they'd allow that. :-)

By the time we got to the car, he was doing even worse so I ended up taking a stop at the ER. The pain was more than he could bear. With the help of some nurses, we got him inside and to a bed in no time flat. I am so thankful that there wasn't any wait. That was a small miracle in itself. They ended up giving him a pretty hefty anti-inflammatory/pain shot which settled things down a bit and then we were on our way.

When we got home, our family doctor called and Bob was able to talk things over with him. Coincidentally, Bob had sent him an email earlier that day explaining what a tough week he'd had pain-wise to the point, he's been having to wake me up during the night to help him. The doctor is very concerned with the amount of pain Bob is having to endure for such a long time on his mental condition so he didn't want us to wait the couple weeks we were originally scheduled to go back to the pain doctor. So he was to call and see if they could get him in ASAP.

We are hoping that we will hear something from the disability office in the least amount of time possible but it could take 3-6 months. It's in God's hands now. We have a lawyer who is ready to help when the time comes even though we still can't afford him but are confident that God will provide the necessary means as He has been so faithful through this whole ordeal. I know that He will not abandon us just as He has promised.

It's a tough place to be....'in need'. I know that disability and state help is there for those who need it but it's hard to be in a position of need. We have always loved to be the 'helpers' but have had to learn how to accept 'help'. The emotional and mental implications of having been in this position are difficult. We don't like to impose or be a burden but are so thankful for those of you who have offered your hearts, your hands and your sustaining friendship. You are a true example of what the body of Christ is and continues to be....the hands and feet of Christ.

Friday, March 12, 2010

Pain Treatment - Round 3

It's been a couple of weeks since my husbands last treatment with the pain shots in his back. Unfortunately, we've seen no relief from all three sets. It's extremely disappointing as I was sure this was going to help if only to dull the pain some which would have been a welcome result. We knew this was a possibility but yet, when you are in that much pain, you hold onto every hope that something...anything will work.

Our family doctor also ran a panel of blood work on his immune system before we proceed to seeing a immunologist. We received the results on that this week. Everything came back negative. This is great news, however, we are still at a loss as to what is causing this debilitating pain. He's seen so many doctors and had so many tests but still remains to be undiagnosed. Frustration doesn't come close to how we are feeling.

We are currently waiting on one more test result to come back. He had an EMG last week to see if they could pinpoint which nerve set is causing the problem. Hopefully, they will call soon. The waiting on test results is driving me nutty.

I'm not sure what is coming next. We need to talk to the doctor after we get this last test result back. It's a feeling of helplessness. We have exhausted so many different avenues but nothing is being revealed. Bob has been in more pain then he usually is this week if that is possible. I feel so desperate for answers so we can proceed with some kind of treatment, some kind of relief. Watching him sob from the pain and the weariness of dealing with it day after day is so draining emotionally for all of us.

It's so hard for me to hold onto hope when there just doesn't seem to be any answers or any hope of finding one. I know that God has this situation in His hands and that He has a plan for this. It's almost impossible for me in my humanness to even contemplate how any good can come from this. This is especially difficult when I feel like we are merely existing and trying to get through each hour without losing it. Sometimes when his pain level is at it's highest and he's had all the pain meds he can take, all I can do is sit there and hold his hand praying that God will give us both the courage and strength to make it through. It's my faith in Christ and not my feelings that I have to hold onto. My feelings are so undependable but God is not. He knows our pain. He supplies our needs, that also includes emotional needs and is working this all out no matter what state of mind I may be in.

We've both been fighting discouragement the last few weeks and are so appreciative of the prayers that have gone up on our behalf. This race we are running is a tough one and all the support we've been shown has been like a cool, refreshing cup of water that inspires us to get up and continue moving forward. So thank you from the bottom of our hearts for your friendship, for your love and for your prayers as we continue to search for some answers.

Friday, February 12, 2010

Another turn...

We had a visit with the neurosurgeon to go over my husband's MRI results a couple days ago. The doctor's take on what he saw was that even though Bob has eleven damaged disks, that while there might be some back pain, it is not the cause of his debilitating, chronic pain. He believes there is something else going on. His suggestion was to see a immunologist. It could be an auto-immune/musculoskeletel issue. So we are back at square one.

I cannot tell you how utterly agonizing this is not only to, after three years and several different ideas of what might be wrong, to be back at not knowing. We've been fighting discouragement since we left the doctors office. The idea of it being an auto-immune issue scares me to death. From what I know (which could be potentially dangerous), an auto-immune disease is definitely not a good thing. I felt better with it being a back issue.

The other frustrating aspect of this is that it's been three years and the doctors still don't know what is wrong. This just goes to show you that sometimes our bodies even stump the doctors. Sometimes, it is simply a process of elimination, to find out the answer which takes time. So my husband remains to be a mystery even to the highly educated doctors. I knew he was special!

On the way home from the doctors appointment, Bob kept asking me so where do we go from here. The answer to that is to keep praying, keep holding on to the hope of Christ and His promises and to go see the immunologist. It's step one. Then we go from day at a time.

The discouragement is devastating. It is hanging around my head like a little black rain cloud. I'm refusing to completely give into it but I can feel it threatening to overtake me. I do find it amazing that for the past few days, I keep hearing sermons and words of encouragement from people to be relentless, to never give up. I know that God is trying to tell me something and I need to listen up.

It has been so difficult to face the realities of what is going on. I know that my husband has struggled with the aspect of not being able to provide for us, to watch our family struggle with what is going on, to know that the things you use to be able to do now are impossible or are extremely difficult. I am amazed at what he does accomplish when he is able as he refuses to become a vegetable lying on the couch. However, some days it is quite an accomplishment to just get off the couch and get to the restroom. Our whole world has been turned upside down. The things that were once are no more and we struggle, as do our children, with the unknown....will we be able to again? That is a question I can't answer and it makes me sad.

How do people deal with debilitation? One day you are functioning at full force and the next, a broken individual whether it be a car accident, a stroke, a heart attack or some other health issue. We just do not know what will happen from one day to the next. We have to place our trust in God and to never give up our faith in Him even in the face of the unknown. Without God, you will get swallowed up in the hopelessness of the situation which in my opinion, is worse than the condition itself. Hang on to hope, the hope of Christ.

For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future. Jeremiah 29:11

We have seen God's promises revealed in our own lives time and time again. I cannot say it enough...that HE will do as HE promised. You may have to wait on HIS timing and that is sometimes difficult but well worth the wait. Do not loose hope. He's got us in the palm of his hand and has a plan for us even in this seemingly impossible situation.

So...even in the face of the unknown and in this place that seems so overwhelmingly impossible, we continue to praise Him--to say Blessed be your name....

Blessed be your name
In the land that is plentiful
where your streams of abundance flow
Blessed be your name...

Blessed be your name
when I'm found in the desert place
When I walk through the wilderness
Blessed be your name

Every blessing you pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say....
Blessed be the name of the Lord

Blessed be your name
When the sun's shining down on me
When the world is all as it should be
Blessed be your name

Blessed be your name
On the road marked with suffering
Where there is pain in the offering
Blessed be your name

You give and take away
You give and take away
My heart will chose to say
Lord, Blessed be your name...

Wednesday, February 10, 2010

Pain Treatment - Round 2

I stand corrected. The pain shots that my husband is receiving is not a treatment per se but considered pain 'management.' It is complicated when it comes to chronic pain for there is no cure for it but rather, trying to manage the pain so that you can somehow make it through the day. It was rather overwhelming sitting in the waiting room at the pain clinic watching all the people who are suffering from it. Pain is very debilitating.

My husband had his second round of pain shots last week. This time, though, he was not in and out in an hour and half. After hour 3 passed, I started to panic. I kept hearing someone or should I say I thought I could hear someone sobbing and it sounded like my husband. Of course, the reality of that is slim since he was in the back of the office behind closed doors and I was in the front waiting room with the television blaring and the people talking. Your mind likes to play little tricks on you. Nevertheless, he was in there for double the time and I knew something wasn't right. I kept trying to reason with myself that I was over-reacting and that I needed to calm down. The nurses were so slammed that day so I was trying not to in my panic, bother them so I just waited.

Finally, after another 45 long, agonizing minutes, they wheeled him out. It was a beautiful sight and relief flooded over me. I almost started sobbing right there but I managed to hold it together which is a mighty amazing feat considering being six months pregnant. After we got in the car, he did tell me that he had a pain attack in the very beginning before they even were able to start the shot process. When this happens, he can't move because the pain is so intense. So the doctor had to give him other medication and wait for it to get into action which then put him back in the rotation for the shots. So he was sobbing but it was in the very beginning not at the time I thought I was hearing him.

I cannot tell you how many times over the last three years I have struggled with the very idea that he might in the end die. I know that for every person this is a reality. Our physical bodies are not meant to live on forever but we do have the choice where our spiritual bodies will live. If you've accepted Christ as Lord and Savior, then you will spend eternity in heaven. The alternative choice is hell. I know that my husband belongs to the Lord and if it is his time to go, then I know where he will be. The idea of the separation and not having him here with me is what has me in a tizzy.

I was so relieved when the doctors had determined recently that the source of his pain was his back because it meant that it wasn't a terminal illness. His pain has been such a mystery for so long and to finally have an answer was such a relief. But somehow, I continue to worry. It's my talent, I guess. I worry that his body is going to get tired of dealing with the pain, I worry that his heart will give out, I worry that something else is wrong....I didn't say I made sense all the time. I do find myself checking to see if he's breathing when he's lying so still when he's sleeping. I know, those thoughts can be irrational but it is something that I struggle with periodically.

So the Lord has been teaching me to trust even when nothing makes any sense. I know that if it came to a point where I would lose my beloved, that God will give me the strength and the courage to face that. I have to trust that God will take care of things if that should happen, just as he is taking care of us now. We have seen some pretty amazing God moments. That will never change as long as I hold onto Him.

It's been six days since his second round of shots and we see no relief again. It's very frustrating. It's hard not to get swallowed up in discouragement. We had so hoped that this would even dull the pain some so that he could function a bit more than what he has been able to. For it not to work, is just deeply disappointing. So we keep moving forward, taking each day as it comes. We keep trusting, believing and praying that God will help us find our way in all this which He does and continues to do.....daily.

Wednesday, February 03, 2010

Pain Treatment - Round 1

I've always struggled with the month of February, not because of the snow but perhaps, because of the lack of sunshine. There is something special about the warmth and the mere presence of the sun that warms the heart, warms the soul and gives hope. I've often thought that when it makes it's appearance during the winter months, I should run outside and set up my lawn chair and soak in it. It's just not the same looking at it through the window....

We've begun the series of pain shots for my husband. The first round was a couple weeks ago. He was in and out in about an hour and half and was feeling somewhat alright when he came out. The first thing he says to me when we got in the car was I'm starving! Of course, I believe the steroids make you incredibly hungry or perhaps it was the 'you can't eat or drink anything eight hours before' that makes one ravenous. He was craving a big, juicy burger and fries so we scraped together enough change to oblige the need. He was kind enough to give me a bite!

Later that day, I had to leave for a bit to pick up our food basket from the church, pick up his prescription and go to the post office. I was only going to be gone for a couple of hours, so I made sure he was medicated, used the restroom, and was tucked in his recliner before I left. However, when I returned, it was a nightmare...

When I opened the door, I found everyone upset and crying including my husband who was in so much pain, he could hardly stand it. Leaving the kids home alone with him in that much pain is just not a good idea. They don't know how to handle it and he is powerless to stop it. When he has these pain episodes, he can't move, he can't function and it is extremely scary for all to watch. We, unfortunately, never know when it is going to occur so I try very hard to plan things around his medication but that is not even a surefire way to avoid these kinds of situations.

There is something about watching and hearing someone you love very dearly go through something so agonizing. It makes a huge impact on your mind and your heart. The sound of his sobbing not only affects me, it is incredibly difficult on our children. In some ways, I think they/we have traumatic stress syndrome. The prayer of my heart is that God will use this situation, even in our children, for good and that He will heal all of our hearts so that there is no lasting damage from this.

The one thing that we have found and have even heard from the nurses is that like a mental illness, debilitating pain is not something we can see. So when we look at person, we sum them up to be alright when in actuality they are suffering just as much as someone who has a horrible illness that you can see. We have been judged and criticized so much because of his 'unseen' health issues but we know that God knows exactly how much he endures on a daily basis to just get through the day. God is the one who continues to give us the strength and the courage to face each day and to continue moving forward.

It's been two weeks since his first round of shots and unfortunately, we've seen no relief. The doctor did warn us that some do not see any effects from the first set. So we continue to look to God who is really the One who heals and we continue to put our faith and trust in His plan. Our mind is set on Him and even in the midst of winter and the lack of sunshine, I am not going to give up and be a victim of discouragement. I choose to hold onto the hope that comes from the Lord concentrating and soaking in His 'sonshine.' His love endures all things....

Saturday, January 09, 2010

God's Gifts

As I look back over the past few years, I am once again reminded of how much God has provided for our needs. There are many promises throughout the Bible that speak of provision but when situations arise in such a fashion that your control is taken out and you have to rely on God, do you really believe that? Are you able to rest in those promises or are you out there trying to make things happen in your own time, on your own terms?

I have to admit that it's been tough for me. I've known people who are able to just trust in God's promises, that can rest and trust in such a simple, unquestioning way. My husband is one of those people. I, on the other hand, struggle with it, wrestle with it and have this overwhelming desire to fix things in my own way. Believe it or not, there are situations that call for you to just wait because YOU can do little to nothing to make the changes yourself. Sometimes all you can do is wait on God to move.

I do not know how people who don't have the Lord struggle through this life. Even though He doesn't promise to remove tough situations and circumstances, He does promise to be with us through it all. I've seen this, felt this and continue to be amazed at how much God is working in and through this situation. I wish and hope that He would heal my husband because it is agonizing to my heart to watch him suffer but that is not what God's plan is at this moment. That doesn't mean it won't happen here in the future but for now, I have to be willing to just wait and trust that God will work this all out.

Through it all, I have been amazed at what God has done. I look at my little Ryan. His heart was so heavy with fear because of a bad situation just a few months ago but God moved on the hearts of our neighbors providing us with a home that was safe for him. A place where he could heal and grow. Just the other day, it occurred to me that his laughter has even changed. God has answered the cry of my heart for healing for Ryan. He is once again a happy little rascal whose love for life is returning down to the twinkle in his eye and the rascally dimple on his cheek. Even the nightmares which plagued his sleep are becoming less and less. God is so good.

This past Christmas, God moved on the hearts of so many Godly people, some of them we had never met before. Our tree had no lights and God provided. We weren't able to buy presents for our kids but God provided even more than what we would have purchased for them had it been us doing the buying. Our car was in bad shape, God provided by fixing it and filling the trunk up to overflowing with gifts and groceries. I am just amazed at the hearts of those who dropped by. People listening to the voice of God to come and help other believers in need and us being able to give voice to hope through our testimony. God is amazing.

I don't know how this situation is going to end up but I do know after enduring so much that I know without a shadow of doubt that God's promises to provide for our needs is true. He doesn't just provide the mere basics but God provides even for things you enjoy on this earth, like Starbucks coffee or gift cards to your favorite store. God cares about those things as well. We need not limit Him because His ways, thoughts and plan is far better than anything I can imagine. I'm only to trust Him with my life.

I am looking forward to what this new year has in store for us, the good, the bad and the ugly because I know in all circumstances God will be right there with us providing for us, giving us wisdom in our steps and leading the way to a better life in Him.