We couldn’t have asked for a better week at Camp…

Ben’s first try as Assistant Director of Round-Up went so well. Amelia did great as a first-time “Bunny Camper” (children of staff who are too young to be campers–they have their own building and staff, basically 24-hour day care, called “Bunny Camp”). I did sleep at Bunny Camp with her (Ben was in the director’s cabin!) and get her dressed each morning, but other than that she was pretty much there without me and loved it. She didn’t even want to talk to us–if we approached her at a meal or saw her out and about, she would say, “No Daddy, I’m with Mrs. Benson!”

Here’s a shot of the bunnies:

We had a wagon train theme for the week, and for Thursday’s skit we utilized the bunnies as Indians who attacked the wagon train!

Amelia spent most of her time with her friend Faith. They are only a month apart in age, and Faith’s mom was running the bunny camp. Amelia and Faith were spotted holding hands all over Camp!

Amelia’s in the middle of the paddle boat, with Faith and her mom…

The bunnies enjoyed corral rides several times, and twice Mr. Fox let me take Amelia out on a trail ride!

While at Camp we got to see my aunt Dulcie and two of my cousins, who were visiting from Las Vegas (sorry, somehow we didn’t get any pictures of them!).

Upon arriving at home, I developed a bad cold, which Ben caught and then decided it was the ‘flu. Amelia sneezed for five days straight, but it never progressed beyond that for her. Amelia enjoyed a visit from her new preschool teacher, Mrs. Bennett. Preschool starts up again in less than three weeks!  Ben and Amelia repaired our fence where it got rear-ended (our homeowners’ insurance denied our claim). Here’s Amelia with our friend Miki:

I heard back from my insurance company that they still do not intend to fully cover the test I had at Cleveland–this time the excuse was that the codes they approved Cleveland to perform do not match the codes for which Cleveland billed them. This is my fault, how?? I had to request a grievance form, which I mailed in a few days ago. I called Cleveland to see how long I have to pay, and they won’t send me to collections until November, so I have some time to try to get this sorted out (we could just pay it, but it is much harder to get reimbursed once you do that).

Amelia playing dress-up:

Congratulations to Ben’s brother Jeremy and his wife on the birth Sunday of their fourth child, Joshua! A link to their website should be at the upper-right-hand corner of our site.

Ben and Amelia enjoyed a short trip to Seabreeze, our local water park. We did not get a membership this year, but Ben had promised Amelia they would go at least once this summer, and it was the first chance they got. They weren’t over their colds (or was it the ‘flu?) yet, but seemed to enjoy themselves anyhow!

Ben is now cleared as a first medic for Chili Ambulance! This means that from now on, when he goes out on calls, it will be just him and a driver, and he’s “in charge” of the driver. He’s been devoting a lot of time to this endeavor, which he sincerely considers a ministry, and he can’t seem to get enough of it!

I’ve spoken with Dr. Plansky a few times, and he is sending me back to the rheumatologist. Before I go I’m to have more blood work. The rheumatologist agrees that I should be on an anti-inflammatory drug, but is not necessarily convinced that I have Crohn’s disease. The trick will be to find an anti-inflammatory that is safe for pregnancy, should such an event ever again occur! Such a drug may not exist! Once September arrives, I hope to have more time again to devote to researching Crohn’s and more natural methods of dealing with it, such as further diet changes or supplements.

We head back to Camp tomorrow for Family Camp Weekend. Family Camp is such a great way to start and end the summer season!

Click for more and pictures!

Dr. Plansky decided to make it official last Friday. So yes, I’ve known I have Crohn’s disease for a week without posting it, but we have been SO busy getting ready for Round-Up, the week of Camp that Ben is assistant directing. We leave Saturday morning and are really excited.

Anyhow, I’ve been having a rebound effect from coming off the steroids…went to the ER last Wednesday because we thought I had a broken wrist. They said it was severe tendonitis and put me in a wrist brace (I have never had tendonitis before-in fact my freshman year at Roberts I think I was the only piano major who didn’t have it–probably because I didn’t practice enough!!). I also have a toothache (in a tooth that has a root canal and crown and should not be able to feel anything…). My dentist could not find a problem and suspects an inflamed abscess. My endodontist (who performed the root canal two years ago) said let’s give it a month and see if it gets better or not.

They all want to put me on antibiotics for the tooth, but that’s what got me into this mess to begin with. Anyhow, Dr. Plansky said that while on the steroids, it suppressed my immune system (all inflammation went away), and when I went off them, it gave a rebound effect, which means that all previous inflammation came back PLUS new inflammation (ie my wrist and my tooth). At least I got a diagnosis out of it!

Dr. Plansky is researching treatment options (as am I) and was supposed to call me by yesterday with some choices. He hasn’t. He wanted to also consult with some specialists as he said the drug treatment will need to be customized for me, as my presentation and combination of symptoms is unusual, etc. I also wanted to know pregnancy classes on each choice. I won’t be starting a drug until after Camp at this point. Likely it will be an anti-inflammatory drug.

In the meantime Ben sprained his wrist and then developed tendonitis on top of it–so he’s in a wrist brace, too! He’s been off work most of this week since he can’t type. Between us we are not accomplishing much! I shouldn’t be typing either…but at least I can now without too much pain. Ben is still jabbing at the keyboard with one finger! Amelia is upset that no one will pick her up. Thankfully my aunt Ellie is taking her to the zoo this afternoon. She is restless as I didn’t babysit this week (can’t really care for an infant with one hand–although I did discover I can tie a bow with one hand!!), so her playmates were not here, and we’ve been so busy on the computer, ‘phone, and at meetings getting ready for Camp. Ben can drive but I can’t, but I think today that’s going to switch, as his is getting worse and mine is getting better. My thoughts are more than a little scattered today…

Amelia took these pictures of us–she was so funny posing us and telling us how to sit and where to place our arms! That would also explain why our heads are cut off!

In other news, my sister, who is expecting her second child in December, found out yesterday that she’s having a girl! Her son just turned a year old a few weeks ago. And my mom will be celebrating her 50th birthday next week, while we’re at Camp!

Good-bye party for our friend Esther, who is going to teach art at a school on Grand Cayman Island for a year! Amelia is showing off her new jewelry…

Oh, also someone rear-ended our fence with their car the other night and knocked over an 8-foot section of fence and split off one post. We are waiting to hear if our homeowners’ insurance will cover it, but it doesn’t look likely at this point. It was a hit and run!

We found out from our health insurance that I am responsible to pay 25% of the consult at the Cleveland Clinic (in addition to the co-pay), which is about $100 (it was over $400 for a 10-minute appointment!!), but we are still waiting to hear what percentage of the special cat scan we’ll have to pay (originally they were asking us to pay about $1,100 of that one–it was over $4,000 for the scan).

So thanks to all who’ve been praying for my health…many people would be devastated to learn they have a life-long disease–but we are so thrilled to finally put a name to it and get on with treatment. For two years we have known I have SOMETHING…so I am way past dealing with the psychological aspect of it and am so blessed to finally be making progress with the medical establishment!!

Pray also for our week at Camp…we have about 50 campers registered (ages 10-17) and are looking forward to a great week!

Let’s review…once my ANA test came back positive, indicating that I most likely do have an autoimmune condition, my doctor recommended we do a short trial of a low dose of steroids. This would determine whether or not my GI problems are caused by inflammation (and therefore the autoimmune disease).

Well, my acne cleared right up, as did other rashes and sores of many kinds. That was nice. At first I was afraid to try new foods…the result is usually disastrous. I started slowly, with a few bites of something, then waited a day. When nothing happened, I tried something else…it didn’t take too long to realize I could eat pretty much anything I wanted to! Here’s what I tried:

Zucchini, chocolate, butter, deli turkey, ground beef with taco seasoning, chili from Wendy’s, few bites of a bacon cheeseburger, tomato sauce, pancakes (with butter and syrup), fried egg rolls, chinese food, meatball sub, peanut butter, parmesan noodles, mayo, cheddar cheese, macaroni & cheese (from a box), chocolate chip cookies (preceded by plenty of raw cookie dough), doughnut holes, apple pie, popcorn, and strawberries.

It was unbelievable. We should have come up with a list of foods to try ahead of time…I got to day 6, realized I could eat whatever I wanted to, and then couldn’t think of what I wanted, or what would make sense to try, such as certain food groups. I’m now on my third day OFF the steroids, and symptoms have returned to the point that I am already back to my previous diet. The acne is also back, just that quickly. I’ve also had some nasty side-effects to the drugs.

In any case, I think we’ve proven two things without a doubt: the problem is not my gall bladder (I consumed a LOT of fat grams!), and the GI issues are caused by inflammation. I go to Dr. Plansky Friday, August 3rd, to give him this report and determine the next step.

Part-way through the trial, I got an email from a friend with a warning that when her husband did this test, he cleaned the whole garage in one day. I thought, well, that would explain my impromptu yard sale last weekend! At least we made some money! I also cleaned out the garage, attic, and basement (all in one day), and did all kinds of other stuff. Ben, trying to describe this, said, “It’s like Jess on steroids!” Forgetting, of course, that I WAS on steroids! Now we know where that phrase comes from. I also only needed 5 hours of sleep a night and could not sit still to read my usual book a day.

So I had one good week! It was fun to eat, but the side effects the last few days would definitely make me think twice before taking these again. And to think, after all the money we’ve spent, it only cost $3.55 for a nine-day supply.  For those wondering, you can’t stay on steroids long-term. It’s a bad idea. This was only a test! Hopefully the result will be a conclusive diagnosis and course of treatment. Stay tuned!

PS  We have received a bill from the Cleveland Clinic for our March visit…although we thought it was covered in full, it looks like the insurance company is only paying 75%, leaving us with about $1,200.  I called my case manager and he said it was a mistake, that it should have been billed in-network instead of out-of-network, and that he’d take care of it.  A few days later he left a message saying he’d passed the case to his supervisor and that she found one potential problem with it.  Friday he called and said he couldn’t do anything more and that I should call Member Services and start over.  What is the use of having a case manager if they can’t take care of stuff like this?  Anyhow, I’ll call on Monday to re-start the appeal process.  If you’re so inclined, please pray with us that this bill will be covered, as they originally gave approval for both the consult and the test…

Crohn’s is an autoimmune disease, but there are many others, as well. The rheumatologist does not think it’s Crohn’s (although I still do) because inflammation did not show up on the CT enterography. His guess is lupus, even though lupus does not typically have ANY GI symptoms, and those are by far my main problem! He wants to put me on plaquenil, a long-term maintenance drug for lupus (actually an anti-malarial). It would improve some of my lesser symptoms, but would not affect the GI stuff, is very strong, unsafe for pregnancy, and the main side effect is diarrhea.

Obviously I have no interest in taking plaquenil!

I promptly called Dr. Plansky, my primary, and was able to see him Friday afternoon. He agreed with me that plaquenil is an extreme and unnecessary step to take at this time, and instead suggested a nine-day trial of a low dose of steroids (the amount given for poison ivy). If my GI symptoms improve while on it, it will prove that my GI stuff is being caused by the autoimmune condition, and we can then work at further determining which autoimmune disease I have and how to treat it. If the GI problems do NOT improve on the steroid trial, the theory becomes that I have an autoimmune condition IN ADDITION to whatever is causing the GI problems…in other words, I will then be said to have TWO conditions, and we will not know what EITHER of them are!

We are going to wait until we get back from a week at Camp to begin taking it, both to make sure I’m not currently pregnant (these steroids are class C, so likely unsafe for pregnancy), and because I prefer to be home when trying anything new, just in case. Therefore, it’s going to be at least two weeks until I have anything new to report…

I am encouraged, however, that we have reached a point where Dr. Plansky is willing to try something. This tells me the possible diagnoses are really being narrowed down for him. I think we’re getting closer!

Amelia’s preschool class took a field trip to a local farm. Click for more pics and a brief health update…

Ben accompanied Amelia on her field trip…they were given a demonstration of some kind of robotic milking, the only one in our state (not that these kids have any clue how milking is normally accomplished!!).

Ben actually learned a few things about pigs he didn’t know before!

He got a shot of the miniature horses for me…my favorite!

Earlier this week Amelia said, “Mama, look, I took all the clothes off my babies and we’re all lying down!”

Jess’ Health Update:

I think the last news was that we’re suspecting a form of Crohn’s disease, but that both my doctor and the doctor in Cleveland wanted me to see a rheumatologist before beginning treatment, to confirm the suspected diagnosis, give other theories, order more tests or whatever. My doctor went on vacation for two weeks in April and told me to see the rheumatologist while he was gone. He would fax the paperwork over before he left. I called twice and they told me they had received nothing and to stop calling. When my doctor got back from vacation, I talked to his staff and they confirmed that they had indeed faxed 26 select pages from my file before he left. They did some calling and found out that the rheumatologist is going to China for a month and doesn’t have any openings until October. They suggested I see her partner instead. I tried to call on Friday, but their office had closed at noon, so I’ll have to try again Monday.

In the meantime, I had another attack on Tuesday. Thankfully I was home. I was very surprised as I had not had one since the Cleveland trip (which was due to the test I had there), and before that I think it was January (that one was due to forgetting to take my probiotic before a meal). I’m not sure what caused this one and it’s making me a bit nervous. I’ve been doing better about being able to get out of the house lately, but now…Thankfully we had already arranged for Ben to take a half day to go with Amelia on her field trip. That day was also his birthday!

Amelia received the movie “Cinderella” when she was a year old…I decided she wasn’t ready for it and waited until a rainy day a few weeks ago to show it to her. She had never before seen any of the Disney movies, and only knew who Cinderella was because she was on her pull-ups. I watched the whole movie with her the first time (as is my practice with any viewing), and she was pretty traumatized. The cat keeps trying to eat the mice, no one is nice to Cinderella, the step-sisters rip her dress, she’s crying, she loses her shoe, later the shoe gets broken…Amelia was crying and I kept pausing the movie to try to explain things, for example, that a servant is someone who has to do all the chores while the other people don’t do any.

To top it off, the happy ending made no sense to her. I’m saying, “See, it’s okay now– she got to marry the prince!” Well, Amelia has absolutely no concept of what a prince is, nor why anyone should wish to marry one. She kept saying, “But they RIPPED her DRESS!!!” Later that day she said, “Mama, that’s a bad movie. I don’t think I should watch it anymore.” When she was in tears over it again later on, I called Ben so she could tell him about it.

However, a few days later she asked if she could watch it again (after the first time through a movie, she’s allowed to watch them in 30-minute intervals only). Over the next week she saw it again, and while still pretty upset over the “bad” parts, she started to find some humor in other scenes.
A few days later she woke up late (now that we’ve installed room-darkening shades in her room!!). I was already into my morning routine, so I said to her “I’m getting in the shower now, but you can make your bed and go potty.” She said, “That sounds like doing all the chores. That sounds like Cinderella.” !!!!!!!!!!!!!!!!!!

Click for LOTS more pictures…

This is the first year we’ve colored Easter eggs with Amelia…she loved it!!

Her drawings are really progressing…this one is supposed to be of me and her:

More Mother-Daughter:

Ben sports one of his Chili Ambulance uniforms:

Amelia took these pictures of us!!

I also received results from the dermatologist…my biopsies and lab work showed no signs of connective tissue disorders or celiac disease.  The only thing abnormal was the mole, which she said is no longer a worry since she already removed it (it had atypical cells, which can develop into cancer).  Her conclusion is that my various skin problems have no correlation to my GI issues.  While I’m glad she didn’t find anything serious, I do disagree with her in that all of our bodies’ systems are connected.   She was very kind though, and will be prescribing me some things for a few different areas of my skin.

We were going to stay with our friends in Erie on the way to Cleveland, but once they changed my appointment to 9 AM, we realized it wouldn’t be practical, so we booked a hotel right on the campus of the clinic for Monday night.  Hopefully we will only have to stay the one night…but *someone* graciously offered to pay for our hotel stay (you know who you are–THANK YOU again!!), so at least we will not have that financial burden.  God is so good.  And who knows, we may get to see our friends in Erie on the return trip, depending on the day and the hour…

The past week has been spent preparing for the trip, and also helping our neighbor prepare for her move.  As of now they are going ahead with the divorce, and the mom and girls will be moving out this coming weekend.  I will still be caring for the girls on Mondays & Tuesdays (although I have this week off for our trip).  Although I always find it exciting to help someone move into a new place, in this case it is also so terribly sad.  Divorce is always a tragedy, and my heart is with these young girls, only 1 and 3 years old, who will join the millions of children growing up without the benefit of married parents.

Their divorce will not be final for several more months, but a temporary custody arrangement was set up by the court to begin when she moves out.  The girls will be spending the night at their dad’s every Monday, Wednesday and Friday, plus all day Saturday.  They will be with their mom all day Sunday and the opposite four nights.  I can’t imagine what the judge was thinking to subject these poor babies to sleeping in a different house every night, especially considering that the younger is still nursing.  There is a chance that the arrangement will change upon finalization of the divorce, but it isn’t likely.  We continue to minister to this family as we are able, but beyond that, Betsy has become a great friend and I will dearly miss having her right next door!!

Here’s Amelia & Ali:

In other news, Ben worked an overnight shift with Chili Ambulance Friday night and had a great first experience there!!

Amelia’s hair is finally long enough to do two french braids…I got a little carried away taking pictures, but I think I’m over it now…

And to all you hair experts on the Archer side, I am aware that the part is not straight and I am working on it!!

We tried the ever-popular teenage method of taking pictures of yourself by holding your arm way out:

Could have been worse…at least you can’t see my arm…and I didn’t even crop it out!!

Another Sunday morning:

I told my doctor I did not want to go as I would actually be seen by a resident, who then goes out to talk to the chief, and then they come back in together for a few minutes.

They already indicated they could not help me and said I should keep my appointment at Cleveland. After that, all of the GI’s at Strong had a conference about me and decided the same. However, my doctor insisted that Dr. Farmer would be taking the driver’s seat this time, that he’d told him the resident was welcome to be looking over his shoulder, but that the chief needed to give me his full attention. So we went.

As expected, we were seen by the resident. He asked briefly how I was doing and if there were any changes. Then he went and found the chief (this took some time as he apparently was not even in the building). They came back together for about five minutes. The chief was confused as to why he had gotten a call from my doctor, thinks my doctor is confused, etc. I attempted to explain the situation.

He has no intention of helping me, nor getting me in to see someone at Cleveland sooner. He said “Good Luck” and proceeded to tell me all about how he knows everyone there, he helped design the building and that there’s a big picture of him hanging there, etc.

He did say they’d like to follow up with me after Cleveland–I was thinking maybe the week we return…he said, “So let’s see you three months after you get back from Cleveland, and we can see what suggestions they had.” Clearly they are completely unconcerned about me.

As the receptionist was giving me dates for a follow-up appointment in June, I was cheerfully replying “It doesn’t matter…whatever you’ve got…” as I have no intention of ever returning.

I was pretty upset, even though it went exactly as we expected…so upset that we forgot to visit a friend from church who was recovering from surgery on the next floor down.

I couldn’t wait to call my doctor and say “I told you so.” By the time we got home, however, I decided to wait and fill him in when I see him next Thursday for our “Cleveland Prep” appointment. Hopefully by then the results of the dermatologist’s tests will be in.

I guess we will go ahead and begin making plans to be in Cleveland March 27th…less than two weeks to go now…

She did remove a mole, which I was not anticipating, and did two biopsies and a culture, as well as ordering more blood work.   We waited for almost an hour at the first lab only to be told that they did not do one of the tests there…the lab person spent most of that time on the ‘phone discussing the ordered tests–most of them she had not heard of…she gave us directions to a different lab, where the bulk of the time was spent poking me looking for a vein.  How is it that a simple doctor’s appointment always turns into a whole ordeal?

The dermatologist thinks a rheumatologist is in my future (Dr. Plansky has also mentioned that) and that I may be developing a connective tissue or autoimmune disease.  As most of the other specialists I’ve seen have also mentioned, she said that my presentation is different, that I’m not a classic case of anything, but am exhibiting bits and pieces of symptoms of lots of different things.

My weight is holding steady and we’ll see Dr. Farmer on Wednesday…

Now at this point, I’m not sure how much sooner he could get me in anyhow…my appointment is supposed to be the 27th and I’ll be seeing Dr. Farmer the 14th…so he’s going to get me in, what, two days sooner?  I suppose there is the chance that he can help me, but he already told me he can’t and that I should go to Cleveland, and after that all the GI’s at Strong had a conference about me and they all gave up…so I don’t really even want to keep this appointment, but Dr. P wants me to.

We also showed Dr. P some new skin things going on with me that have developed in the past month or so…one being that in the evenings my hand gets hot, swells up, turns red and develops a weird rash.  This happens three or four evenings a week for a few hours, always the same hand.  I still write down everything I eat and cannot pinpoint a certain food that could be causing it.

As this doesn’t occur during the day, Ben put the pictures on a jump drive for the doctor, who thought that was the coolest thing ever!!  I’ve also developed some strange acne on my cheeks, which doesn’t really bother me, but I thought these things worth mentioning in case they are linked to the GI issues…

Dr. P says they are definitely related and became very excited…he says these could be the clues to finally solving this and got me in immediately so see a dermatologist.  I’ll be seeing her Monday morning, then taking her opinion with me to Dr. Farmer on Wednesday.

I also convinced my insurance company to assign me a new case manager, and this new guy, Dave, is wonderful!  He’s a nurse, and it turns out he used to work with Dr. P.  Dave is going to try to get my probiotic approved…we are currently paying $70/month for that one supplement alone, so even if they put our standard $40 copay on it, it will save us $30/month.  We should hear about that in a week or so.

We are holding off on making travel arrangements for Cleveland until we know for sure when we’ll be going…so at least two more doctors appointments this week…