SSDI Decision #2!

Yep.  Huge news!  I got a fully favorable decision in addition to Tim's decision (more info on that here).  We are so relieved!  Thank you for all of your prayers.

PICC #2 Out!

Big day yesterday!  I got my 2nd PICC out.  For the first time in nearly 2 years, we are a PICC-free home.  We were talking about this yesterday morning before my nurse came over to remove my PICC, and my daughter Sarah said in a sad voice, "It's kind of fun when the nurses come over.  They're so nice."  She's right.  All of our nurses have been great.  My best guess is that we've had around 150 nurse visits in the last 23 months.  All our nurses were all very nice, but it will feel so freeing not having to schedule our days around nurse visits anywhere from 1-4 times per week. :-)

Tim took pictures of the whole removal process.  If you're into that kind of thing, I'll share the posts here.  If you have a weak stomach, you might want to skip this part :-)

Getting started taking the bandage off

Peeling the bandage back

Getting there

Just about off

No bandage!

Pulling the line out

More...

More...

Taking a break on the pulling because it made me dizzy and light-headed

There is is!  Out!

My arm with no tube!

All bandaged up until tomorrow.

And there you have it.  No more tube in my arm.  I had an appointment with my doctor yesterday to discuss what comes next.  The plan for now is to continue on most of the supplements I was already taking, focus a lot on detox, and re-start the Cowden herbal protocol.  I'm looking forward to being off the antibiotics again for now!

SSDI Hearings, FINALLY!

After a very long year and a half of filling out paperwork, waiting, fighting, and waiting some more, we finally had our disability hearings this week.  Out of all the days in a year, they scheduled our hearings a day apart.  Because of that, we decided to spend the night at a hotel downtown.  My hearing was late morning yesterday (Thursday), and Tim's was bright and early this morning.  We had to catch the cab from our hotel at 6:45.  Oh. My. Goodness.  I can't even tell you the last time I was up that early.  I got up at 6 every morning for years and years, but my poor body is screaming at me tonight for dragging it our of bed at 5:45 am.

Anyway...So my hearing was yesterday.  The lawyer's office called earlier in the week and asked me to bring any medications that my doctors had prescribed for me, whether prescription or supplement.  I literally had to bring a rolling suitcase that took a lot of effort to shut.  In case you'd like a good laugh, here's what that looked like:

Pathetic, right?  Seriously.

We got the the lawyer's office at 10 am and met with the lawyer at that time.  We had an hour and a half before the hearing time, and we were supposed to use that time to discuss my case.  Didn't happen.  The lawyer spent almost the entire time picking through my supplements telling me which ones were good or bad, whether I should be taking more or less, and showing us You-Tube video on why people shouldn't eat meat. I'm not kidding.  Tim was there and can verify all of this.  So out of that hour and a half, we spent about 10 minutes actually discussing my case.

We then went down to the court room (the lawyer's office and the courtroom are in the same building) and went through security, signed in, and then twiddled our thumbs until the judge was ready for us.  We found out at the last second that Tim would not be allowed into the courtroom with me.  I was surprised and bummed by that, but I dutifully followed my lawyer into the courtroom.

The hearing itself went reasonably well, but there are some things that I don't feel got enough consideration.  In any case, it's over, and now I wait for my ruling.  The lawyer told me it typically takes about 1-3 months to get a ruling.

And then Tim's hearing was today.  We had to be to the lawyer's office by 7, so we decided to take a cab from our hotel.  Parking yesterday was an absolute nightmare and we were both completely worn out and lethargic by the time we actually made it in to the law office.  We took a cab and got dropped off right at the front door of the law building.  Best decision we've made in a long time!

So we got (back) to the lawyer's office at 7:00, rolling suitcase in tow, and they were ready for us quickly.  We are both still shocked at the difference in the 2 lawyers.  Beyond night and day difference.  Tim's lawyer was really great.  He did a great job asking probing questions and walking Tim through what the judge might ask and what to expect.  No fluff.

We walked down to the court area about 8:30, but the court recorder was running late.  Tim was ushered into the court room at about 9:00.  I sat in the waiting area and worked on the scarf I'm knitting for a sweet friend to try to take my mind off what was going on in the next room. :-)  At about 9:30, I heard Tim call my name and I looked up.  I walked over and he said "Disabled."  Wait, what???  Apparently, the judges very occasionally make a "bench decision." This is when they feel that there is such overwhelming evidence in favor of disability that they do not require the additional time to review the case after the hearing.  That almost never happens.  What an unexpected blessing.  Things have been so tough for us recently, and we are so thankful for this glimmer of hope.

Of course, we are still hoping for a favorable decision in my case, but we won't know for a while yet.

We trashed almost all of our life's belongings-Mold Saga Part 2

Good bye, nice little house.  Sniff, sniff :-(

(Read Part 1 here)

Yesterday was a hard day.  Our house has been sitting empty for a few months now as we live with Tim's parents, but all our stuff was still there.  Since it is now poison to us, it all had to be thrown away.  We tried to keep some things, but time will tell if we are actually able to do that.

There is still a bunch of stuff in the garage because the 30 yard (huge!) dumpster was full.  I guess that happens when you put all the beds, couches, tables, bookshelves, toys, books, and everything else from a family of 5 into a box.  It was awful watching all of our stuff going into that dumpster.  Of course, stuff can be replaced, but some of it is very expensive (particularly considering we are on month 14 of having no income...), and some of it is irreplaceable.  Our kids were so sad to see all of their books, toys and school projects thrown in the trash :-(

We still have work to do on the house and garage to get things cleaned up as much as we can before we are out of there completely, but we just walked away from at least 80% of our earthly belongings.  I'm so glad my real treasures are in Heaven.  This has been agonizing.  Especially since we have no idea if or when we will ever have income again.

We are so thankful for my little brother and his friend  who gave up a whole Saturday to come haul junk out of our house.  They were going strong for a couple hours but then they needed to ask us for respirator masks (that we wear anytime we're in the house) because the house was making them sick too.  It was very telling to us that our house made 2 young, strong, healthy guys sick after a short amount of time.  It was more evidence for us that we made the right decision getting our family our of that toxic place.

In case you want to know what a whole house of garbage looks like, here you go:

They aren't the best pictures, but I wasn't able to get any others.

5 long years...

Today marks 5 years since Tim started his Lyme treatment.  Had you talked to us then, we would have never in a million years guessed that this is where we'd be today.

To back up a little but, I'll start at the beginning and share some of what led up to the momentous day of beginning Lyme Disease treatment...

Tim had always been a very healthy and fit guy.  He always had physically demanding jobs and physically demanding hobbies and enjoyed it all immensely.  When he started getting sick enough to skip work often (after having never done that in his life) and coming home from his nightly runs and weekly basketball games with knee pain, we knew something was wrong.  He spent 5 months in early 2009 in bed as we went from doctor to doctor to doctor.

Our best estimate is that he saw about 30 doctors in that 5 months.  Based on the experiences of acquaintances, hours upon hours of online research, and a very kind-hearted doctor-turned-Lyme-advocate that we credit for saving Tim's life, we figured out at last that it was Lyme, no thanks to any of the dozens of doctors we sought for help.

Once we knew what we were fighting, we assumed it would be easy to take care of it and get back to life as normal.  If that were true, I wouldn't be writing this post today.  At the time, there were only 3 Lyme doctors in our state, and only 1 of them was accepting new patients.  It was going to be 3 months until we could get Tim in to see him, and we truly didn't think Tim would live long enough to make it to the appointment based on how quickly he had been deteriorating.  This was April of 2009.

After lots of research, we learned that there was a doctor in New Jersey who specializes in Lyme and had an opening in 2 weeks.  We packed up the kids in the mini-van and drove 24 hours each way for a 2 hour doctor's appointment.  That was such a momentous day.  After not knowing whether Tim would make it out alive from this devastating mystery illness, we finally had hope.  That appointment was on May 4, 2009.

We drove home and picked up Tim's prescription at the pharmacy on the way home after a 12+ hour day of driving.  He took a picture of the prescription because of what it represented to him.  Hope.

Also, as a bit of an aside, I'd like to share a couple other pictures with you.  These were taken on January 1, 2009, and they represent the last of our former life.  We took our kids sledding that day and were able to have fun and climb up the hill over and over with them, and we had no idea that within a few short weeks Tim would be in bed fighting for his life.  At this time, Sarah was 3.5, Andrew had just turned 1, and we didn't have Jonathan yet.

We've been poisoned out of our house-Mold Saga Part 1

Good bye, nice little house.  Sniff, sniff :-(

Last winter we tested our house for mold and the results came back very high.  Since we were already having work done on our house (and living in a hotel), we decided to have the mold remediated while the walls were all torn apart.

Tim and I have been having a very difficult time health-wise these past few months, and we've been working with our doctor to try to dig up any possible reasons why the Lyme treatment we've been on for years doesn't seem to be making us better any more.  We both saw improvement for the first couple years and then started backsliding over time.

After racking our brains, we remembered that we had not discussed our previous mold situation with our current doctor.  When we did, she asked to see the report.  We faxed it to her that same day.  She personally called me and yelled into the phone "I know why you and your husband are still sick!"  Well then.  She's very kind and caring.  She was just very concerned for us.

She was shocked at our results.  Here are some of them:

No matter how much someone knows about mold, I don't think anyone wants to see "major" so many places on their mold report.  Particularly Stachybotrys (black mold) in 3 areas on both floors of the house.  We were so nieve.  It's maddening to think that we have been living in that house for an additional 15 months after we received this report.  We didn't know any better.  And it didn't help that the guy who did our inspection said levels were "not bad right now."

So, last year when we were out of the house, we had our house remediated of the mold.  Or at least we thought we did...  What we now know is that all the mold was already inside the walls and then when the walls were torn down, the mold was released into the air like a wild animal rushing out of an opened cage door.  Not only was our house not fixed, it was made worse.

We talked this through with our doctor, and we agreed that we needed to get out of our house.  It was a very hard decision to make, but it was somewhat easier than it otherwise would have been since our house is already on track for foreclosure.  So, as of this week when we returned from our doctor's appointments, we no longer live in our home.  We will never live there again.  We're really sad about that.  We are currently staying in Tim's parents' basement, and we don't know what comes next.

Another visit to our Lyme doc, and a trip to my new allergist!

I had another trip to my amazing Lyme doc on Monday, and then an appointment with my new allergist yesterday.

My appointment was a bit of a bummer.  My doctor and I  made the decision that I will get another PICC since I've lost so much ground since I got my other one taken out.  I plan to discuss this with my primary doctor, who is local, in hopes that I can get it inserted at our local small-town hospital.  We love our little hospital and have always been cared for well there, and we are not familiar with the large infusion company our Lyme doctor typically works with.  I am hoping to get the ball rolling on this soon so I can continue moving forward with my treatment.

AND THEN I went to my new allergist yesterday!  Both he and our Lyme doctor are far from our house but relatively close to each other, so I'm hoping it will continue to work out to visit them together in the future.  You may remember from the first time I mentioned this that his first opening was in June, so it was great to get a cancellation appointment in April!  This allergist is no stranger to people with ridiculous illness-inducing (and even life-threatening) allergies.  He's been doing this for nearly 40 years and has studied under some of the greats in the field, and he is passionate about his job.  That's a great quality in a doctor! :-)

The allergy office is big and new and beautiful (as far as doctors' offices go...).  There are several dozen employees, and it runs like a well-oiled machine.  It's a busy place.  We started out by meeting with a nurse to get all my stats and vitals.  We then went to a different waiting room than the first to wait to get into the doctor's room.  We were called back and met with his nurse for a moment.

After that, the doctor came in and introduced himself.  He is an older man with a kind smile and a great confidence.  We went over all of my past medical experience.  He started with birth (yes, really!) and went through my childhood illness and surgeries, the births of each of my children, and all the way up through all the details this current Lyme saga.  He is brilliant and so talented at what he does.  He knew just how to test me for different allergies I might have.  He sent me out to the testing area, and here is what my arm looked like when they were done with me:

They have fancy ways to inject, measure, and keep track of what is what.  I didn't understand it all.  So glad they do. :-)  The one at the top that is so huge was dust mites.  Some of the others include different types of trees, grasses, and molds.  I am allergic to so many environmental things in addition to all of the foods.  It's hard to even know where to go from here.  We have a toxic mold problem in our house (which I will explain in a later post) and now I know that I am also severely allergic to several types of mold as well.  That means I have a double-whammy as far as living in a moldy house.  I will continue to monitor these spots for the next few days and report any changes to the doctor.

According to my allergist, the allergies that I have are a result of the "total load" my body is carrying.  The toxins from the Lyme, mold, and all of my different treatments over the years have become too much for my body to handle.  It now attacks things it shouldn't be attacking, and now doesn't know how to handle every day things like eggs and trees.  I wish I could just tell my body that it doesn't need to freak out when I'm exposed to eggs and trees, but it doesn't seem to work that way...

I received sublingual allergy drops (more info on those from the ACAAI here) from the allergist's office and will start those in the next day or 2.  The idea is that there are trace amounts of the things I am allergic to in the drops.  By taking these drops each day, my body should eventually be able to handle these things again.  They have to start at low doses and go up over time.  The drops I currently have contain only dust mites.  The doctor said he gave me just a small percentage of the amount he would give others because of my immediate and extreme reaction.  I am so thankful he knows what he is doing. :-)

I will add in additional drops in the future.  Treatment with this type of allergy drops typically takes people about 5-10 years to complete, so I've got a long road ahead of me!

One last note in case you're interested...here is what a PICC looks like:

Picture found here

It's official...we're losing our home

It's official.  The sheriff showed up on our front step this afternoon to deliver the bad news.  Our home is going to be foreclosed soon.  The official date of the sheriff's sale is May 9th, and then we will have 6 months to be out.  We knew it was happening, as we haven't been able to pay the mortgage since Tim lost his job, but it is so much more real now that we have official papers in our hands.

Tears were shed around here today.  Our house is just like any other small starter house in the suburbs, but we love our neighborhood.  We live on a wonderful cul-de-sac with over a dozen kids.  Our kids are happy to play outside with all their friends any time they are able.  Our neighbors are so great, and we will miss them and the true neighborhood feel terribly.

We worked so hard to buy this house, and it's the only home our children have ever known.  We are so upset that this illness has stolen this from us too.

Disability Day on the Hill

Sarah decked out in her "Lyme green" to go to the capital.

I'm so proud of my daughter!  Our local Lyme group took part in Disability Day on the Hill today.  People with disabilities went to the capital to meet with their senators and representatives to discuss the difficulties disabled people have, what legislation would be helpful in the everyday lives of the disabled, etc.  Tim and I were too sick to go, so our daughter Sarah went with my parents.  We set up meetings in advance and she brought a letter Tim and I had written as well as some pictures of our family, and she told the politicians our story.  At the age of 8, she represented our family well.

We are so proud of her for being brave and talking with politicians about our family's struggles.

Here is another picture of Sarah with one of the politicians she met with:

New doctor for me too

I loved Tim's new doctor the first time I met her, and I have continued to be impressed with her as we've gone in for Tim's follow-up appointments.  I am so thankful that I was able to get in with her as well.  The appointment yesterday went very well, and I will go back for a follow-up in April.

When Tim did the food elimination diet last October, I decided to do it with him to see if I could figure anything out.  It was both good and bad.  It was good in that I was able to figure some things out, but I wasn't very happy with what I figured out.  I know now that my body can't handle eggs, peanuts, oats, dairy, and food dyes, in addition to gluten, which I already knew.  I've been gluten-free for 3.5 years now.  I have also had 2 anaphylactic reactions recently to my homemade beef jerky.  I'm not sure what that is about at this point, but I am the proud new owner of an Epi-pen.

This doctor seemed to know intuitively that I have a bunch of other allergies and recommended that I go see a well-known allergist in the next state over.  I called after I left the appointment yesterday and his first available appointment isn't until June!  I asked to be added to the cancellation list, so hopefully I can get in sooner than that.

Overall, I am so glad to have gotten in with this new doctor.  I love her treating style, and she is brilliant.  She is always going to conferences and reading books, and she is so knowledgeable in the areas of conventional health care, herbs and supplements, and homeopathy.  The best of all worlds!  And on top of that, she really truly cares about her patients.  We love her and are hoping we can stay with her long-term.

Update on Andrew

I realized I shared this on my own page but not on here.  We had an appointment with Andrew's orthopedic doctor last Tuesday (he broke his leg a few months ago) and here is the report:

"This picture was taken less than 5 months ago when my sweet boy broke both his tibia and his fibula in a sledding accident. We went to his last orthopedic appointment this morning and his doctor was THRILLED with how great his leg looked. Looking at the xray, he said that his leg is "straight perfect" and he wants to print off Andrew's xray to show to other people how a perfectly healed leg looks. He expected it to get back to normal, but he originally thought it could take around 2 years. AMAZING! I am so happy, and in awe of how God created our bodies to heal!"

Roller Coaster

Lyme is a roller coaster.

I spent the first 2 years that I had Lyme in pretty good shape.  It interfered with my life more than I liked, but it didn't stop my life.  And then my life stopped.  For the past 16 months or so, I've been more or less a hermit, mostly only leaving the house to go to the grocery store (sometimes, when I am able) and the never-ending doctor's appointments.  No playdates with friends, no church on Sundays, no homeschool co-ops, and no family gatherings.  I'm so thankful that we have had such wonderful family and friends to help us through this time, bringing us groceries and medications, doing our laundry, and helping with our kids.

In the past month or so, I have started to feel better.  Last week I was flying high.  After a year and a half of sleeping at least 12 hours out of 24, including a nap almost every single day, I was able to go back to sleeping 8 hours at night and not a single nap all week!  I also used to wake up in moderate to severe pain every day, and I woke up with no to mild pain every day last week.  I was even able FINALLY to put in some time cleaning up and organizing the basement (yes, it was 7 months ago that it flooded...) and getting some things out to the garage to get ready for our garage sale.

Friday night I started to get bad.  Saturday was worse with a lot of pain and fatigue all day.  Then yesterday (Sunday) was the worst day I've had in months.  I spent a lot of the weekend in bed and had a ton of pain again.  Today is a little better than yesterday but still bad like I used to be.

As much as Lyme is a roller coaster physically, I think it's even more of a roller coaster mentally.  Even though I was used to feeling really crappy for nearly a year and a half, it hurts more this week after having a relatively good week last week.  I got a slight taste of "freedom" from the prison of Lyme, and now it's got a hold on me again.  I'm hoping this is just a fluke and I will continue on the upward trend I have been on for the past month.  I'm so ready to put this all behind me.