The Mess....and More!

So things have certainly been interesting around here...as usual.

I’ll go back a little....

A little over a week ago we had to take our new puppy to the animal hospital because one of the kids {accidentally} closed the door on the doggie’s leg and it looked pretty gnarly. Fortunately she was okay and no broken bones {$130 later}.

This past week on Friday Natalie had a fever in the morning, so we didn’t send her to school (just in case she’d have a fever later and they’d want us to come and get her). Then throughout the next 3 days all the kids & Jon seemed to have some form of just general “yuckiness” with a fever scattered here and there and some vomiting. Unfortunately we had Natalie vomit in the middle of the night and all over her bed. NOT fun to clean up. My poor washing machine can’t catch a break around here!!

Saturday evening I was able to go by myself (since the rest were all sickies) to a fun gender reveal party for our dear friends Tim & Suzie. Turns out my guess was right - baby Sophie Marie is due in August and I cannot WAIT to spoil her (and take lots of pictures with HUGE flower headbands - haha).

Monday evening I had the privilege of taking photos for our church’s passion play for the second year in a row (more to take at Thursday’s rehearsal too). I was really tired and needed a pick me up to do the photos, so I got an iced caramel macchiato at Starbucks (my new favorite, though they are too pricey to feed that addiction too much) to wake me up. Stupid mistake - but probably a blessing in disguise. I drank that at 6 p.m. on Monday. Needless to say I had a hard time falling asleep that night.

Finally around 3 a.m. I felt like sleep was coming. Then I heard a loud noise upstairs. Natalie's bedroom is directly above our bed and she walks like an elephant, so I just thought it was her going to the bathroom and tripping over something (maybe the bin I had left sit in the hallway - oops). So I listened for a few minutes and still heard a little noise, so I thought I better go check on her. I walked up the stairs and didn’t take in the whole picture - I focused right on Natalie standing in the kitchen coughing and crying saying “I can't breathe!! Mommy, why is there so much dust!?” I then opened my eyes to realize the house looked like it had been covered in baby powder and there was thick dust in the air you could taste. Adrenaline kicked in and I woke Jon up and said something is wrong, I don't know what. He came upstairs and immediately knew the smell. He said it’s a fire extinguisher. What is going on?? We looked down the hall, and sure enough the closet door was open and the extinguisher in the closet was on the floor. I later found the pin during cleanup, who knows how that was pulled, and the only thing we can figure is it fell over and squeezed the trigger enough to spray.....EVERYWHERE. {see pics} We quickly took all 3 kids downstairs to our room, which was the ONLY room in the house which had zero dust in it since it’s so separated and the door was closed. Natalie was coughing pretty badly saying her throat burned, and Jon tried to help me figure out how to start cleaning, but he was coughing and eventually vomited from the chemicals, so he stayed down with the children. I took about an hour and just tried to use my regular vacuum to vacuum up the really loose stuff. About 4:15 I decided I needed to get at least some sleep because Tuesday was going to be a busy day of cleaning, unfortunately. So myself, Jon, all 3 kids, and Mia {puppy} all found a spot on our bed and slept (with no heat on a 28 degree night mind you since we turned the furnace off until we could clean up all that dust). 7:00 a.m. came quickly and we were struggling to wake up, but we had to get the girls to school. So I went upstairs and found clothes for the girls, grabbed a cup of milk and fixed some yogurt with granola for each, took them downstairs and had them sit on the floor and eat breakfast. We got them out the door to school and then the day’s tasks consisted of getting a shop vac from my father and vacuuming what I could, and then LOTS of scrubbing. Nevaeh’s room needed dusted and vacuumed, the hall closet where the extinguisher was needed completely emptied, all linens washed, and everything wiped down, the upstairs bath needed everything cleaned, the kitchen needed floor to ceiling wipe down, and one pantry needed completely emptied and wiped down - plus all the upstairs laminate floors needed mopped - 2 times - and still need more. We had two friends come and help with the cleanup, so I was actually finished around 5:00. Not bad. But boy was that a nightmare - especially finding it in the middle of the night!!! Natalie was originally going to see the dr last evening because she was complaining her throat hurt and her chest hurt (she had the most exposure to it other than me from cleaning) and I was concerned, but then she was running and playing just fine outside, so I figured it couldn’t be that bad!! We are thanking God that despite the mess, frustration, and inconvenience, nothing serious was damaged (we threw out some food that was exposed) and no one has any health issues from it. So God is good!

Last evening the kids went to bed at 7:00 and we never heard another peep from them and they slept until 7:00 this morning - so they all got good rest. I had only had about 2-3 hours of sleep the night before, so I was sawing logs by 9:30 and felt pretty rested this morning!

So today Jon had to be at Hershey for a 9:00 {new} appointment with an endocrinologist. He was being seen to help evaluate why his Vitamin D & B12 is deficient and how to help him get to a good level and maintain. It was a good visit, and this doctor is nice.

He was mainly concerned about his Vitamin D levels more than his B12 and said to just continue taking the 15,000 IU daily that he’s been (in addition to what is contained in his bariatric multi) and we’ll keep an eye on it, but that he’s in an “ok” range right now.

His Vitamin D is 8 and should be minimally 30. So, now that he is able to walk again and should be increasing his activity, he again stressed to be outside 20-30 minutes a day to help get some naturally from the sun (which he was already trying to do, it was just not happening very often). He will have extensive labs done to check various things, and then will be given a regiment to follow for 3 months and be rechecked in August. He said he may be taking a large amount of supplements (we thought 200,000+ IU a week was a lot) to bring him up and even maintain, but that there is never “too much” you can take and we just have to figure out how much is enough for him. Unfortunately this is a side effect of the gastric bypass, and unfortunately his family practitioner isn’t well knowledged in care of a bariatric patient, so this is where we’ve come. BUT, we’re moving forward with doctors who DO know how to help him and are working fervently to find the solution. And this doctor made a comment that was reassuring that regardless of the complications, this surgery was a good thing Jon did for his health (coming down from 500 pounds to a low of 197 - gaining about 60 pounds while being basically immobile for a year which he hopes to lose again).

So that’s what’s going on around here - always something new it seems.
But God is GOOD and we are so thankful that Jon is able to walk again, be outside and even help with some yard work, and hopefully work his way back to being stay at home dad while I work my normal hours. In that aspect if you could please pray for us as parents. Riley is a difficult child and we’re dealing with a lot of behavior problems which are especially straining on Jon when he tries to watch him while I work. Just pray for God to show us the right things to do and to be calm and have the right attitudes through it all.

We appreciate your prayers and are so thankful to be giving GOOD news lately rather than bad!!! Hopefully they will continue to be good updates in the future!!

God bless and have a wonderful week!

{Just a few pics for fun}

Just a little bit of update...

There's no book to be written really for this update, but it's a GOOD update, so it's well worth my time! :)

Jonathan has seen improvement!!!! His leg jerks have decreased and he has not fallen nearly as much as before. Praise God!!

That being said, he is still suffering from very serious pain (remember one of the meds decreasing is his primary pain medication), and excruciating spinal headaches & migraines. He is anxious to be up and moving again, and finds himself trying to do more with less leg issues...and pushes too hard too soon. Saturday he tried to be outside with the kids and do a "little" around the yard. Unfortunately he had a fall and ended up with a rock landing on his hand, so he's having pain with that now too. BUT...he is improving in the leg issue area!

But we are thankful to see even this small/huge improvement and continue to pray for complete healing!!

Thank you for all the prayers, friends!!

So Much Cuteness!!

New Family Member {Mia}

We did it!

We finally got a puppy. We had been talking about it for a while and just hadn't found the right fit yet. Well, last week we did.

Meet...Mia. She is now 10 weeks old (born Dec. 24, '11) and she is a Pug/Terrier mix (not to be confused with a JUG, which is a Jack Russel/Pug mix). She is SO adorable and a very, very good puppy...easy to care for. The kids are in love with her, and I have very quickly become a dog lover....at least the small kind.

Hershey Internist

Okay.

So yesterday (2/20) Jon finally saw the internist at Hershey. I wouldn’t mind him seeing this man as his primary care doctor...

First, Jon had labs drawn here in York on Friday to check his Imipramine levels, Vitamin D, and Vitamin B12 levels. So I had him call his PCP to get those results to take with us.

Not great news on 2 out of 3.

Imipramine = should be 100 - 200. He was 194. Praise God he’s not in the 500’s toxic range anymore! GOOD!

Vitamin D = should be 50 - 70. He was 14. He is now 8. NOT GOOD.

Vitamin B12 = should be 1,000 (per his neurologist). He was at 179. He is now 122. NOT GOOD.

Our appointment was at 3:20 and we were to arrive at 3:00 for check-in, intake, etc. We tried to take a shortcut ... and didn’t get there until right at 3:20. Oops! They were fine though, and he was back in a room by 3:30. The nurse was only in with him maybe five minutes, and just a few minutes later a resident came in. She was great too! I’m not sure how long she was in with us, but it was a while. Then she went and got Dr. Simons and they were both in with us. When the appointment was over, everyone else had already gone home - it was around 5:45. He was very thorough and in no hurry to rush us out the door. Praise God, because Jon’s case needs focus and thought for as many details as there are.

After bringing him up to speed on EVERYTHING...we started discussing.

First let me explain for those of you who may not understand Jon’s “falls”. Imagine the feeling of when someone comes up behind you and knocks your knees out from behind. Well, his legs do this kind of “jerk” motion and he loses feeling and down he goes - all within a matter of a split second, with no warning. He then will lie there until his legs regain some feeling in them (like they were asleep), and eventually back on his feet again.

Dr. Simons believes this is what is called a “Myoclonic Jerk”. He says this is caused by two things.

First, the narcotic he is on for his pain. He said how medicine has changed so much, and that they are learning things now about narcotics that he didn’t learn about when he was in med school many years ago, and they have to learn how these things are evolving.

Secondly, he believes he has “Serotonin Syndrome” caused by the Imipramine and narcotic together causing his body to produce too much serotonin and remain in his brain (also causing the memory problems, and the delirium he had after his concussions).

The course of action to reverse both of these causes is to take him off the Imipramine and ANY narcotics. Now Jon has not been narcotic free for 8 years. This is an overwhelming thought, but he is willing to do anything it takes. We’re taking one step at a time. He will decrease the two medications over the course of at least 2 months (not sure how long they will take to decrease the narcotic but he should be off the Imipramine within a month) until he is off them completely. He is still on a few other pain medications that are not narcotics. We’ll see how his body functions at that point and go from there. BUT, once those two medications are out of his system, we should see improvement. Since Jon’s PCP was NOT on board with taking him off narcotics completely, Dr. Simons will be sending a letter to him stating what needs to happen and why he needs to do this.

HOWEVER...

The Vitamin B12 & D deficiencies are still an increasing problem. No matter what we’re doing (including B12 injections, taking bariatric special vitamins PLUS additional supplements) his numbers continue to drop. This can also be adding to the jerking and muscle weakness.
Dr. Simons said he was referring Jon to an Endocrinologist. I informed him he had seen one here in York in December, and pulled the physician notes from my file to show him. He was dissatisfied with her lack of thoroughness (my words), so he said you need to see someone here at Hershey. So, like I said, everyone was gone when our appointment was over. This morning we received a call he has an appointment with Endo @ Hershey on March 28th. Dr. Simons needs them to figure out WHY he is not absorbing his vitamins, and figure out how to get them in him. Until then, he continues to take what he has.

So, we left there with a plan. But it takes time.

I’ll be honest, I left there with mixed emotions.

Happy that we have a doctor who cares and is working for us, not on his own agenda. Happy that he has hope for healing for Jon. We don’t know how complete, as he still has fibromyalgia and chronic pain, but to be able to walk, drive, and function again.

Angry. Mostly at his PCP. I know being a doctor is hard. I know that medicine changes and grows. I KNOW there’s a lot. But if you don’t know what you’re doing -- if you don’t know how to manage a medication (or three), then DON’T. Refer your patient to someone who can. Don’t make a 31 year old man live a year of his life in a wheelchair debilitated because all you know to do is add more drugs. It just seemed so effortless for Dr. Simons to point out these problems. Like a “duh” kind of moment. Yet the PCP didn’t know anything about it. So infuriating. I gotta stop talking about that part.

So we received some frustrating news (that this could have been addressed a long time ago), some disappointing news (that his vitamins are decreasing), and some hopeful news - we know what some problems are and how to treat them!!!

So please continue to pray for us. Stress is high. It’s easy to say words out of anger, sleep deprivation, anxiety, and just plain stress. I’m doing the best I can to work when I can, but this past week I realized I just can’t keep doing the amount of hours I was doing before. My employer is fine with that - I take what I want, it’s just learning to get by with less pay ... for now. But I was burning the candle at both ends to try to maintain everything the “way it was”, and I just can’t.
So we continue to take one day at a time. And now we wait. Wait for the appointment at Endo, and wait for the meds to decrease and leave his body to heal.

Thank you so much to everyone who has brought us meals, offered to watch the kids, and just given me a hug and encouraging word. Remember, Jon is here too. I know men don’t like mushy gushy hugs and I love you’s, but a phone call, stop by to sit and talk, watch a movie, watch sports or whatever men do! He needs encouragement too.

This week =

Nevaeh sees the nutritionist tonight @ 5:00. We’re hoping to get some insight on how to keep her from becoming too overweight. We care immensely about her and her health, and she’s not at a good weight right now, so we need to do what we can to teach her and help her young.

Friday morning Jon has his stress test @ York Hospital early in the morning (Kent is taking him).

So those are the upcoming appointments this week and please continue to pray!!!

Yesterday afternoon I took Nevaeh to her pediatrician. She has been complaining of constant headaches and frequent belly pains with the headaches, and she has had problems sleeping (both getting to sleep and staying asleep) for a loooong time. We thought back in the summer that she may be having headaches because she needed glasses. She did need them, and got those in September. Nothing has improved. Her words to the doctor were that she has headaches every day, some worse than others. So it’s time to try a medication. She’s had an MRI and tests to rule out anything serious. So the doctor suggested Elavil (over Periactin since she the Periactin can stimulate appetite and we don’t need that...). However, it can cause heart arrhythmias if the person has a heart condition. So we left the doctor’s office and went to Apple Hill and got an EKG done. Once we hear the results of that (a day or two), the doctor will decide if she can start the Elavil.

Then at 5:30 Jonathan had his appointment with the psychiatrist. WOW. First of all let me commend this doctor. He had excellent “bedside manners”, was kind, listened to our questions, and talked with us like equals, not degrading us. And the icing on the cake? This man normally sees his last patient from 5:15 to 5:30. He agreed to this appointment because of the urgency expressed to him. We did not leave that office until 6:45, and he was hoping not to miss his daughter’s ballet practice, and not ONCE did we feel rushed. Now THAT is how a physician should be. I’m not saying I think my life is more important than a doctor’s personal life, but you know what I mean.

So this hour and 15 minutes was spent filling him in on ALL of Jon’s life history. That’s a book in itself! When we finally got to the here and now, we started discussing this medication issue that Hershey had pointed out. I’ll do my best to explain.

Imipramine. It is an anti-depressant, but can be prescribed for pain, which Jon has been taking to treat his headaches/migraines. Up until January Jon was taking 250mg per day for months. In January he told the doctor his pain was increasing overall and he needed a med change or something. The doctor’s first response was let’s see if we can increase the Imipramine. Then he hesitated and said well, maybe we should check your levels (to our knowledge he’d never done this in the 2 years he’d been on it). So we did. When the levels came back, the nurse called and said skip a day completely, then decrease to 150 mg because your levels are elevated and “near toxicity”. She wouldn't tell us the levels. So he did what she said. Then this whole concussion and delirium thing happened and Hershey said hmm...maybe the meds contributed to the delirium. So his family doctor told him just two weeks ago to decrease to 100mg, as well as decreased his primary pain medication a dose. Yesterday at the psychiatrist as he was pulling up records on his computer, I asked him if he would please tell me what the last level of Imipramine was.

Now before I tell you his number, I will tell you that the psychiatrist informed me that 150-200 (units or whatever) was normal range (so obviously 200 being the highest they would care to see it). He also informed me that with this medication, unless you keep it within that therapeutic range, it’s not going to benefit you, and if anything it can harm you and cause heart problems and KILL YOU. Yes. He said this. He also said one needs to have labs drawn every three months to make sure they are maintaining within that therapeutic level. Now. Jon’s number??? 523. Yes. MORE than double the therapeutic level. I was shocked. I was angry. So my next question was, if this isn’t at a therapeutic level, and it’s not doing him any good, he should stop taking it, no? He looked up what the half-life of the med is, and said he could stop taking it immediately and within 24 hours it would be out of his system. 24 hours. 24 hours!! And yet his family doctor simply decreased him little by little. No wonder he ordered the stress test and heart monitor next week. He’s covering his butt since he realizes he’s been overmedicating someone and possibly giving him heart problems. Oh the anger I feel. Let me tell you. Well, actually I won’t. I’m sure you can guess.

So we left the psychiatrist's office with the plan to skip last night’s dose, then tonight start to take just 50 mg per day. He will have his levels checked on Friday. Since the half-life is only 24 hours, he should be within therapeutic range. We will keep him on the 50 mg dose for a few weeks to see if he feels it helps at all, and if not, he’ll stop it completely. The psychiatrist doesn’t “need” to see him back, but we’re going to follow up in March and see how things are going.

So now some of you may have pieced another thing together...the medication Nevaeh will be on is in the same family of medicines that this Imipramine is. Thus the EKG. So now when I hear from her pediatrician as to her EKG results, I’m going to discuss my concerns with her. Most likely if we simply check her labs regularly (as should have been done with Jon), it will be okay. We’ll see.

It just blows my mind that Jon’s family doctor was obviously medicating him all these years with this medication that he didn’t know how to properly monitor (which is why he ended up at the psychiatrist last night!) and could have killed him!!! But hopefully, maybe, he’ll feel better overall with this toxic level of medicine out of his body - and now I’m praying that he DOESN’T have a heart problem - most likely from these meds, because that’s been mentioned that maybe he’s falling because of an irregularity with his heart and I wasn’t worried before because I thought heart problem? Wouldn’t that be more obvious?? Well, now I see where the heart issue is coming from. And it’s scarier than ever.

So keep praying.

Much needed update.

So I haven’t updated in a while. The more I write, the more I feel guilty for sharing my feelings.

Like I’m supposed to have this all under control. I’m supposed to be this Godly wife who just trusts that God has everything in His control and to just face each day with HIS joy and take care of the husband and children that I prayed for so many years.

I don’t have it under control. I know God does, but my human-ness gets in the way of completely resting in that peace.

Things have been {*understatement of the year forthcoming*} .... chaotic around here.

Just after my last post, it happened. I could see Jon wasn’t doing well and that we were in for a rough patch.

On the 26th of January, Jon fell {again} and hit his head. He recovered and got back in bed. About 20 minutes later he started vomiting. Repeatedly. I called the doctor, and his doctor said with his problems - head to the ER. So I frantically made some phone calls for someone to watch Riley, someone to be at the house when the girls got off the bus, notified my work my work wouldn’t be in by deadline, and notified Jon’s parents. My mother came here and took care of kiddos until Kent {father-in-law} could get back from New York, and Ronnie {mother-in-law} met me at the hospital. They did a CT scan and x-ray of his shoulder, which he was complaining was hurting, and said everything was fine and he could go home. The discharge instructions were “Don’t fall. Repeat concussions are more dangerous the closer they are together.” Encouraging, since he’s had probably a dozen in the last 10 months. We headed home.

Friday he was tired, but okay. This is the day I received a packet of papers from Social Security wanting ALL medical information from the last 12 months - every doctor he saw, dates of visits, tests run, treatment received, etc. - and they wanted it by 2/3. I panicked. We had had plans for a date night (a rarity!) Friday night and a sitter for the kids. Jon felt he wasn’t quite up to the movie & dinner we had planned due to the headache, so we just went for dinner and rented a movie to watch at home. It was nice and went well.

Saturday. All was well. He did fall once in the morning in Riley’s bedroom, but was okay. That afternoon he lay in bed watching TV while my mom & I worked on cutting out all the kids’ {58} valentines with my Cricut. We ran out of paper, so she took Nevaeh with her for a craft store run. While she was gone, it all went crazy. Jon came flying up the stairs. He walked around and gave each of us a kiss on the head and said I love you in a half-drunk kind of voice. Then he was just acting silly...very loud silly. At first I thought wow! This is the Jon I always imagined with our kids - where has he been?! As he continued, I realized something was wrong. VERY wrong. I tried to talk to him and ask him to calm down (he couldn’t hold still). I asked him to look at me and talk to me. He couldn’t. He got annoyed at me trying to talk to him and d-a-n-c-e-d down the stairs. I said “Honey, please sit on your butt to go down the stairs to be safe.” He replied “I can’t! I’m dancing!!!” Once downstairs we could hear him singing theme songs, talking to the TV, and just incessant talking. I went down to check on him and he was literally spastic on the bed. Legs and arms and whole body just constant movement. And he couldn’t help it. I still couldn’t get him to calm down and really focus to talk to me so that I knew he was okay. So I took his daily pill box and the med box and said I’ll be back. I called my mother and told her to hurry. She was almost home. When she got home she said call the doctor. I called the doc on call and he said he needs another CT.

I went down and tried to talk to him about it and explain what was going on. He just kept chirping in a bubbly voice I’m fine. I’m just going to take my meds and go to sleep. He wouldn’t listen. So I called his parents. They came immediately. THEN he got angry. Agitated and angry. Upset. He was completely lost somewhere inside his mind. My heart was breaking and I had to walk out of the room for a moment. I was terrified what happened to my husband and if he was going to be like this forever. We finally got him to angrily and reluctantly get in the car. We headed to Urgent Care hoping to cut out some time. Oops. They didn’t have a CT scan, just x-ray and US. Fortunately they weren’t busy, and we were out in no time... but headed to York ER. Once there they did labs before he was even back in an ER bed, and then a repeat CT. Jon didn’t remember anything at this point from 48 hours before. The date - gone. {Just this weekend he asked if we could rent the same movie we watched that night & I had to remind him we’d already seen it}. Everything was fine, but the doctors understood the concern and were going to keep him overnight for observation. However, we expressed concern that he would simply be watched overnight and released with no progress and that he was being followed by Hershey docs. So they said they couldn’t direct admit him to Hershey, but they would call and speak to the neurology department there. They did, and they agreed to see Jon, but through the ER there as well. By the time he was discharged from York it was 2 a.m., so I needed to get home so my mom could go home. Kent & Ronnie took Jon to Hershey. My understanding is this.

The amazing neurologist had pulled Jon’s records and was EXTREMELY thorough, and was very familiar with Jon’s history. He expressed that based on the CT’s, he ‘simply’ has a concussion, and is “fine” in that respect. However, he noticed that some of the medications Jon is on sent up a red flag for him. Apparently 3 of them could interact and could have caused the delusional behavior. He was sent home with advice to see a psychiatrist within 2 weeks to address the medication problems, and of course a follow up with his family practitioner. The doctor also made the suggestion that it might not be a bad plan to completely start fresh with his medications. He hasn’t been UNmedicated in 8 years (this week is exactly 8 years since he got sick), and it might be a good thing to detox him gradually and then build and see what treatment works best for him.

So Monday was spent on the phone with insurance and doctor’s offices & the Social Security Office telling them I needed MUCH more time than a week to get all that paperwork together. They agreed and gave me a 2 week extension. However, every psychiatric practice I called said they had a 3-4 month waiting list for new patients (if they were accepting them at all). I didn’t know what to do. He had a follow up appointment with his family practitioner on Tuesday. We discussed the medication concern that Hershey had. He was not in agreement about a complete detoxification, but agreed we should decrease some medications. He did. I suggested he try to get Jon in with a psychiatrist, because I wasn’t having any luck. He wasn’t confident he could do any better, but he would “try” to get him in somewhere sooner.

For two weeks from that appointment he pretty much stays downstairs to avoid more injuries, yet continues to fall even in the few feet he walks downstairs & has hit his head more times. He also started having chest pains. He feels. Like. Crap.
Friday 2/10 we got a phone call from a psychiatrist’s office. The man scheduling the appointment said that the doctor was informed there were some concerns with medication interactions and that’s why Jon was being referred. The psychiatrist had reviewed his records, and was extremely concerned. However, he was booked until May also. HOWEVER, he is so concerned it needs to be addressed asap. He is staying after his last appointment on Wednesday to see Jonathan. Praise. God.

Fast forward to Monday 2/13. He had a follow up with his family practitioner. He informed the doctor of all his symptoms and issues. The doctor recommended decreasing his pain medication a dose further. He asked a lot of questions about the chest pain. He ordered a stress test (not one he has to walk though). He ordered a heart monitor to check for any irregular heart issues. He also recommended we get a second opinion from neurosurgery because he still feels the falls are from his spinal cord being pinched. So that is the plan.

These next two weeks are super crazy. He had an appointment 2/13 with family doc. 2/15 I take Nevaeh to her pediatrician at 1:30 for a slew of problems she’s been having that I’ve just been putting off because I can’t deal with anything else. Later that same day at 5:30 is Jon’s appointment with the psychiatrist. Monday, 2/20Jonathan finally sees the internist at Hershey (first time)! We are so excited and hopeful for answers. Tuesday 2/21 Nevaeh sees a nutritionist. If you know her, you can guess why. No more needs to be said. But I’m thankful because I think it will be helpful for the whole family. Thursday he goes to the cardiologist for his heart monitor. Friday he goes to the hospital for his stress test.

Saturday the 25th. Oh, sweet Saturday. It’s what’s getting me through these two weeks of doctors. Church of the Open Door has a “retreat” day for women who are wives/mother’s/caretakers of husbands or children with disabilities. Spa treatments, pedicures, haircuts, quiet worship. Free. This is an amazing, AMAZING thing. I almost missed out on the opportunity, but God knows what He’s doing!! And I am praying to find some connections, friendships, and support. Especially support. Maybe there are support groups I don’t even know about. I cannot wait.
So a day in the life right now consists of trying to keep Jon safe, which unfortunately for him and me means he needs to stay put. Unfortunately for him, because it’s depressing to be confined. Unfortunately for me (and I don’t mean this selfishly) because it means he needs to constantly have his needs brought to him. I am learning to be have a servant’s heart/attitude more and more, that’s for sure. Slowly, but I’m learning.

The girls are struggling with some behaviors at school, which I think is due to stress at home. Riley is definitely acting out to get attention any way he can, and it’s hard for Jon especially because he pushes the wrong buttons for him for the wrong kind of attention, and it just ends up in hurt emotions.

But we’re together. We’re taking one day at a time. One step at a time. Meals show up occasionally, which is such a blessing. Jon’s grandparents came from out of town for a visit, and while they were here helped us to get things done around the house. Cleaning, cooking, hanging mirrors. What a blessing. I’m always stressed come Tuesday when I pick up work, and I stress myself out thinking how in the world am I going to get all this work done by deadline, and every week God opens doors and He takes care of everything. It’s not easy, and I’m tired. We just have to do things a bit differently around here, ya know?

So that’s the latest update.

Things you can pray for =

Pray for all these upcoming appointments. That we will have answers. That the doctors will have compassion. That Jon will find some relief.

Pray for doors to open. Doors for some assistive equipment for Jon, nursing help, and any help that is available to make life just a little bit more peaceful for all of us.

Pray for the kids emotionally. Nuff said.

I’ll try to update with all these appointments as I can. Until next time...

Another day...

So Jon went to see his doctor a few weeks ago - like the first week of January I think it was. He had a lab slip from his last appointment with the surgeon in November - he was to get his B12 and D levels rechecked since they gave him ONE B12 booster shot at that appointment. They said to get the labs done in January. So with the upcoming visit to the family doc, I made sure he got rechecked before then.


Fast forward to the visit. Jon pleads with the doctor to do something because his pain is getting worse and unbearable, and he can't take it. The doctor silently stares at his computer and clicks all around at who knows what. He softly says I see you had labs done earlier this week. I speak up and say yes - what were the results? He says "The D results aren't in for some reason, and your B12 is borderline, but not that bad. We do still need to get it up." I reply WHAT WAS THE NUMBER? He says "It does need to come up some, but we have to give it time". I repeat WHAT WAS THE NUMBER? He finally says 179. 179? Seriously? It was 178 three months ago. He has been taking obscene amounts of B12 (he takes 7500mcg/day) and he had the booster shot in November that everyone said would help tremendously. So besides the fact that it's obviously NOT coming up at a reasonable pace, 179 is NOT acceptable. His neurologist at Hershey (who discovered the problem) stated that his levels should be around 1,000. So Jon spoke up (which I was proud of) and said no, Hershey says it needs to be 1,000. Doctor simply stuttered and moved on to the next topic. He is thinking out loud and says "Have you ever tried Neurontin for your pain?" To which Jon & I both quickly replied YES! Mind you he was on around 3,200 mg every day for oh, 5 years?!? But obviously he didn't remember that or bother looking (and yes...it's on his chart med list). He then says "Have you tried XYZ (the name is slipping my mind at the moment..)?" To which we replied YES. He can't take that because it tears up his stomach. Again - on the chart med list). So he says well, let's try Lyrica. He had prescribed it once before, but we were in the midst of a Medicare and secondary insurance issue and it wasn't approved. So he said he would try again to have it approved. Fast forward a little - it was approved for 3 years at 75mg twice a day. Praise God! He also then says, well maybe we can increase your Imipramine, but maybe I should check your bloodwork first. So that's where he left things. They gave him a B12 shot in the office and said they will give him one monthly until we can get his levels up where they need to be. We left and got the labs done.

Last week we got a call that his Imipramine levels were borderline toxic. Doctor states he will "have to keep a better eye on that" and that he should decrease his dose from 5 to 3 pills a day. Gee, glad he complained he was having more pain that prompted you to check his levels....ugh. So, here we are and he is trying a new medication (the Lyrica) and decreased his Imipramine. However, he put a call in to the doctor yesterday because his pain is getting unbearable. It seems his meds are just losing their effectiveness. The doctor increased the Lyrica to double the dose, hoping it will get built up in his system faster. So we wait.

He's falling more, his headaches are worse, his memory is worse. We had a couple over to watch football on Sunday, and had a nice time. Yesterday he says to me "Hon, Nevaeh said R & S stayed all day yesterday, is that true?" I said yeah, you don't remember? He said not really. I remember them being here, but not really details. How late did they stay? I honestly find it so sad and heartbreaking. I know it's just a very, VERY small taste of what families who have loved ones with Alzheimer's go through, and it's sad.

So yesterday I put an emergency call in to MOM. I said mom, Jon's going downhill -- I'm gonna need more help. She already watches Riley every other Thursday. She said she could take him today overnight (she just picked him up) and next week she'll take him Tues/Wed/Thurs, so that's a good start. Jon is in bed, and hopefully won't *need* to get out of bed until Thursday morning (this is mom's off week for Riley). I'm settling in at my desk for a few hours of typing until the girls get home from school, then it's homework and dinner. Jon's mom comes tonight to read to them and put them in bed...I may just take a break from work and go to the couponing group @ church tonight...but I feel guilty. I should focus on getting stuff done here - there's so much! Hopefully this weekend I can get some baking/cooking done to have some meals in the freezer. Unfortnately, I know the signs, and I can see Jon is going down. I don't know when, but probably one of these mornings he just won't be able to wake up and he'll be in a *coma* for a while until his body regains some strength. So I need to prepare and pace myself. We have a gift card for the movies and we have a babysitter for Friday night - we were planning on a date night, so I'm praying maybe he can get enough rest these next 3 days that we can do that. Our relationship is so strained and we need that time together. Sure, we're with each other 24/7 since I work at home, but it's not meaningful time because it's kids, cleaning, laundry, bills, etc. and hardly ever just enriching time together. We're trying to make it a point more to do dates...but this is what seems to happen. It's hard to plan! So that's the life around here.

Just keep those prayers coming, we appreciate them!!

Testing - Life, not Medical

I have a Joyce Meyer daily devotional plan on my Bible on my iPhone. It even reminds me every day to read it!

I've been lacking. Some days I just ignore it. I know I shouldn't. I know I need to draw closer to God, not ignore Him. Regardless of my feelings, I do find some comfort in knowing I am a child of God and that He does have an ultimate plan for our lives. I cannot imagine going through this without my God by my side.

But I'm still human. I still feel the emotions that come with testing. I can still feel lonely. I can still be sad. And I am.

But today when I opened up my devotional, it was just enough to help me through ... just today. Just one day at a time. That's all I'm striving for at this point.

Here is what it said...coincidence? I think not. My God is not a God of coincidence.

Life is filled with challenges that test our determination and our faith in God. Whether we're faced with the impending threat of evil or with everyday hassles, the quality of our character is sure to be tested on a regular basis.

It would be a great mistake to overlook the fact that God tests our hearts, our emotions, and our minds. What does it mean to test something? It means to put pressure on it to see if it will do what it says it will do. Will it hold up under stress? Can it perform at the level its maker says it can? Is it genuine when measured against a true standard of quality?

God does the same with us.

Are you being tested today? The key is to keep trusting God, even if you don't understand. There is no such thing as trusting God without unanswered questions, but when you push ahead, despite your doubts, HE will build you up and make you strong.

I'm not perfect, and I don't claim to be on a spiritual high, happy and joyous that God is testing me. BUT - I'm going to try just a little harder to face each day with "God, what are you trying to teach me?" and use whatever that is for His glory.

REALITY

Warning: I state my true feelings in this post. I don't mean to offend anyone, but I don't feel anything I have said is unpleasing to God or that I have any reason to be ashamed. Read at your own risk.

Things have been difficult around here.

For the last few weeks I found myself just saying “get through the holidays, it’s just the stress of holidays”. Well, it’s not. It’s just life.

We had a wonderful Christmas. I worked a lot of long hours and long days the last few months because Jon & I really wanted the kids to have a special Christmas. We know material things won’t make them happy, but there is so much chaos around here all the time and so much stress, we wanted to be able to give them one of the things all three have been wanting - iPod touches.
And so we spread out our Christmas shopping over the last few months (we started Christmas shopping in August!), and we were truly blessed as far as gift giving this year.

None of it matters. I would give it all away to have peace and health in our home.

I know that life is filled with peaks and valleys. I know that there have been times I’ve had
super happy posts and I’ve dealt with life in a positive way. Today is not one of those days. This month is not one of those months. I personally am in a very low valley. I am sad. I feel hurt. I feel stressed. I feel like a failure in so many ways. I feel burnt out.

There are simple things that are getting to me, maybe even call them selfish things, and then there are big things. One of the simple things is I find it extremely frustrating that I have to drive everywhere and do everything. I can’t ask Jon to run to the store for a gallon of milk. I can’t have Jon run and get pizza for dinner. I can’t ask Jon to take the kids to the park and have quiet time here at the house. I can’t have Jon take Natalie to gymnastics. I have to take all the kids to their appointments. I have to take Jon to his appointments, lab work, pick up his prescriptions (do you realize I’m at the pharmacy at least 5x a month?) I have to drive everywhere, all. the. time. I hate it. I hate driving -- well, except when I’m by myself (rarely), because that means quiet time in the car. It’s not a big deal - but think about your life. Think about everything your spouse drives to/for. I know I never thought about it before I was in this situation. It’s a pretty big deal ... to me. I have the responsibility of doing things around the house - things that may seem so simple, but they’re not. I have two heavy bathroom mirrors that have been sitting in the box in my master bath for months.....because I can’t hang them myself (or at least not get them up there straight!! Haha) ...nor do I honestly know how to hang something so heavy in a proper way. Call
me ignorant -- it’s the truth. In a few months it will be my responsibility to get the supplies to put a shed in the back yard - something about stones and wood to make a support?? I don’t know...but I’ll have to figure it out...and get it done. This house needs painted inside. Terribly.
I have some of the paint - but no time to do it where I won’t end up with a 5 gal bucket of paint on my floors. It’s never ending the things that normally would be no brainers in a house - but I have to figure out how to take care of them myself - and do it myself usually.

I’m frustrated with Jon’s health. It’s at a standstill with doctors, yet he’s actually been feeling worse. As of right now they just started with monthly B-12 injections. That’s it. My mom helped me find and I purchased some sublingual Vit D & B-12 pills for him to take (they dissolve in his mouth) to see if it helps with his absorption, since it’s obvious that’s an issue. He sees a new doctor, an internist, at Hershey on February 20th. I had a list a mile long of things to do and phone calls to make yesterday, and somehow didn’t have “get a new family doctor” on that list. So that will be on my call list for Friday. Jon is incapable mentally and emotionally of handling this task, and it can’t be put off any longer. I just have to do it. Imagine though, having gone to more doctors than you can remember or even keep count of, and every single one saying the
same thing -- they can’t help you. They don’t know why you have pain. So now imagine trying just one more. Yeah, it’s not going to be easy.

I’m frustrated with our children. That’s not to be mistaken with saying I don’t love them. I DO. Our children are very, VERY high energy and very intelligent and need a lot of stimulation, both physically and emotionally. I’m tapped out. Jon’s been tapped out. They come home from school, and it’s just instant mayhem. They’re not bad. Really, they’re not. They act the way they do because of the life they live. It’s not normal. We send them off to school M-F. Saturdays Natalie has gymnastics in the morning for an hour (at which time I usually have the question of when am I going to put Nevaeh in Karate -and Riley too) and I start having heart palpitations because my heart aches for her. I want to. I need to. But I just cannot imagine adding something
else to my schedule. Bedtime is ridiculous. The girls have gotten slightly better, but Riley -- oh wow. Just last night I noticed on my phone at 10:00 I had a random text from Natalie’s iPod - I knew immediately he had gone into her room and taken it off her dock and done it. So I go upstairs and find him in Natalie’s bed, under her covers, she’s sawing logs, and he’s playing her iPod. This is 2.5 hours after he was put in bed originally. Jon & I tag teamed putting him back in his room and dealing with the screaming until he finally went to sleep. Natalie & Nevaeh have each or both been waking up in the middle of the night with nightmares or saying they can’t go back to sleep. I don’t know how to help them. Nevaeh has constant pain, constant headaches. I have had her to the doctor and I’m just dreading taking her back again, but I know I need to.

I’m frustrated with relationships. I’m being real here people - and I speak for myself and Jonathan - we feel abandoned. We attend a church of roughly 2,000 people, and a LOT of those people know who we are simply because my father-in-law is one of the pastors on staff. Since Jon started deteriorating in May - TWO people have made a point to actually come to the house to visit him. TWO. That’s almost 9 months, and TWO visitors. One person has made it a point
to call or text and even come and pick Jon up and take him to breakfast for a few hours. Yes, you have to load his wheelchair in your trunk and you have to come get him, but it’s not THAT
bad. The other has come to visit and also helped tremendously in the beginning with watching kids, helping make sure we could get to appointments and such. Yes, for the first few months we had meals brought to us, and don’t get me wrong, that is such a blessing. Jon used to be our cook (and he still is for the most part), but it’s hard for him to stand and cook a meal each night. I
am not in any way trying to sound ungrateful. But I would like to think that if I had a friend who was going through what we’re going through - I would reach out to them. Call them, e-mail them, send a note of encouragement, offer to help in whatever capacity I could, and VISIT. I mean he’s basically a shut-in. Yes, I drag him to the store with me and he goes to lots of doctor appointments, but he doesn’t get out to socialize. He can’t even attend church at this point
because of his migraines and the noise level is too much for him.

From my perspective, I feel like there are a lot of people who say they are praying for us -- and they are, and I am thankful for that...but I feel like it ends there. Over the last 9 months I have had 2 women who have faithfully called me or e-mailed or texted and have brought meals and gone out for a bite to eat . But for the most part, I don’t have much of a social life either outside this house. Thankfully I have a friend thousands of miles away (not really that far, but it feels like it!) in Georgia who puts up with my incessant rants via text -- maybe someday I’ll meet her!!

Some of you may be reading this thinking WOW. She is really ungrateful and that’s really rude. I’m sorry you feel that way. I know it’s hard to comprehend and understand what Jon & I are going through. I know it’s sad and depressing to talk about our life. But when someone has cancer or breaks a bone or someone dies - everyone jumps to shower that family with help and support, no? Jon’s “cancer” is long term. We’ve been dealing with it for almost 8 years and it may be for the rest of our lives. It’s just as hard as the first day - no, make that harder, because we
have 3 kids now. But it’s easy for people to forget. Easy for people to just move on and just say all I can do is pray. Where is the love in that? If your child had long term health care needs, would you grow “accustomed” to them and be less concerned about their well-being, emotionally and physically? No. You would be there every day. Now, I’m not saying that our life is your number one priority. Goodness I know people have lives. I know people have children. I know people have jobs, extracurricular activities, and other friends. I also know other people are dealing with hard times and heartache too. So I’m not saying HEY LOOK AT ME, I’M SPECIAL. I’m
not. We’re not. But we do need friends and genuine love and support, and we feel very abandoned.

Saying all that, I know we need to trust God, and we DO - but He created us to love one another.
He created us for each other. I wouldn’t wish my life on my worst enemy, and I can imagine being on the other side of the picture and it being difficult to know how to love and to express
that love. All I ask is that you try. If not for/to me - to my kids. To Jonathan. We’re human, and humans crave love. It won’t take away our pain, it won’t take away our struggles, but at the end of the day it will make us SMILE and feel like we really matter to someone and that someone actually knows we’re still here and loves us.

So now that I’m done my pity party, I’ve got to get back to work, which is a whole other post!

Again, I don’t mean this post to be offensive to anyone or to hurt anyone’s feelings. But I don’t
feel as a Christian I should have to pretend or hide the way I feel....and maybe some of you don’t even realize how much we’re hurting or how much we need this kind of support. Now you do. So please, if not for me, for Jon - don’t let him go through this alone - and for the kids, help us make them realize how special they are and how loved they are, regardless of the stress at home.

You never know how something so small might make our day THAT much brighter.