We Wait

When I start getting a lot of questions about how Joel is, I know it’s time to write a blog post. So here’s the latest.

Joel is currently tapering off his medications per doctors’ orders. They recommended this so they can see what the real symptoms of his disease are as apposed to the ones the medications are causing. The Mayo doctor had him coming off much slower and less harsh than our local doctor. To know faster, Joel opted to go with our local doctor’s recommendation. Regardless though, the Mayo doctor said it would be “pure evil” to come off of the meds. So needless to say, Joel feels horrible. His temperature is elevated and he has tremors, fatigue, fevers and joint pain and inflammation. You can just look at him and tell he’s sick. Unfortunately there’s nothing I can do to help so it makes it hard. Time will tell what the diagnosis is, but for now, we wait and he suffers.

He has an appointment Monday to meet with the ENT surgeon and we’re hoping he can do the sinus surgery right away. There’s a chance he might not allow it because of the high risk medication and possible infection but both Mayo and our local rheumatologist said it needs to be done right away so hopefully he’ll listen. Then, October 20-28, Joel will be at a California clinic monitored by doctors through his employer Whole Foods. They pay for travel and the whole program so that is awesome.

Our good friend, Karen Englert, here in Las Vegas took it upon herself to organize a benefit ride for Joel in November. This will help us with his medical bills. It’s set for November 3 so mark your calendars and watch for more details coming soon. If you know of any businesses would like to donate raffle prizes or anything to giveaway in the swag bag, please let me know and I’ll forward her the information.

We continue to wait to hear about long-term disability. They sure like to take their time. So right now are two specific prayer requests are for that and for Joel to get through this tapering of medications. I feel like I am constantly asking for prayers from you all, but I can honestly tell you, they work! Thank you!

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Crashing Down

Today I’m reducing my steroid dose from 10 mg/day to 5 mg/day. I will take this dose for one week. Then I will go to 5 mg every other day for one week and be done with the steroids. I’ve waited a long time for this, although the last two times I tried to get off the steroids things went very badly. The doctors at Mayo recommended a very slow taper from 10 mg/day to zero by reducing the dose 1 mg/day for two to three weeks. That would have me completely off the steroids around Christmas. I wasn’t especially keen on that idea since getting off my medication may mean a trip to the hospital if history were to repeat itself. My rheumatologist set a different reduction schedule that would have me off in just three weeks. While this is more of a crash than a reduction, I will be happy to be off of them and hopefully have a clear diagnosis before the end of the year.

The last time I tried to get off the steroids, my fingers swelled so badly that I couldn’t get my ring off. There was concern that we would have to cut it off, but after five days at a higher dose the swelling went down enough that I could muscle off the ring. This time around is similar, although I’m wearing a different and more easily removable ring, and my hands and wrists continue to give me trouble. Every day feels as though I have the flu, emphasized by joint pain and fatigue. My temperature has continued to vacillate but has not yet reached a medical fever.

I have known for some time that the steroids would create their own little mess in my body. I have gained nearly 50 pounds since being on them, and that in turn has caused some breathing problems while I sleep. Being heavier than I ever have been has made my life a little more challenging as well. I don’t ride my bike as fast, or get up hills as easily, or get off the couch with the grace I used to. But this is temporary and I look forward to getting back to my normal weight. When Kayla expressed concern over getting off all of my medication so the doctors could better determine exactly what’s going on with me, he said that the alternative was to keep me on 15 mg of steroids each day. He said this would result in me having renal failure, cataracts and osteoporosis inside of ten years. Which one do you think we chose?

This week we ask that you would pray for a smooth transition off of my medication. Thank you for your continued prayers and messages of support. Jacksons for Joel was a huge success and a HUGE thank you to all of you who contributed to that for us.

Final Mayo Update

Many people have asked what the latest news if from Mayo. The easy, short answer is, “It’s complicated.” And others have asked how Joel is feeling. The short answer to that is, “About the same – bad.” Here is the long version.

The final Mayo notes have a list of 10 health concerns. Here are the most concerning ones, in order of priority.

  1. The rheumatologist at Mayo does not think it is lupus. Kinda crazy to have three doctors, including one from UCLA, say he does have lupus and then this doctor doesn’t. However, he does see an immune deficiency in the blood tests they ran. Nobody has previously checked for this so it was news to us. This would explain why the lupus medication isn’t working because it is suppressing his immune system rather than boosting it. This is the biggest question we need to solve, but the only way to do it is to monitor it over time. Joel needs to see an immunologist here in Las Vegas so he can look at the immune deficiency results and continue to test them. Joel went to the primary care doctor yesterday to get the referral for this specialist. Interestingly, the Mayo rheumatologist doesn’t want Joel to taper off the immunosuppressant just yet.
  2. The prednisone that Joel is taking is veiling symptoms of his current disease and they cannot tell which symptoms are from his disease and which are side effects from the medication. So Joel will have to taper off slowly. This will be pure torture, but it has to be done to get to the root of the problem. At the current rate they are recommending, it will take him 6-7 months to taper off of it, during which our rheumatologist here will have to closely monitor him. The doctor in UCLA said the prednisone is saving Joel’s life and every time he has tried to go off of it, even slowly, he has gotten sick. The prednisone could also be causing the tremors Joel is having, or it could just be the stress on his body.
  3.  They really cannot explain why Joel has had two bouts of aseptic meningitis. If he gets it while tapering off the prednisone, it could indicate lupus again.
  4. Joel needs sinus surgery. He has severe sinus disease. For a normal person, sinus infections aren’t that big of deal. But being on the immunosuppressant and with a possible immune deficiency, Joel can’t fight it. Also, there is a possibility that with chronic sinus infections like Joel has, the infected fluid can leak into the brain and cause the meningitis. Based on CT scans, they don’t think this is what happened but there’s no way to know for sure. Either way, surgery will decrease the amount of infections. The surgery is currently scheduled for October 11 at Mayo, but we’re going to try to have it done here in Las Vegas through our insurance so we don’t have to pay cash for it. Our primary care doctor has requested the CT scans from Mayo and then will refer us to a local ENT for the surgery. They also took some cultures and they were positive so they called us after Joel had left Mayo and gave him a new anti-biotic. No doctors were headed down this sinus disease road at all, so we’re thankful Mayo caught it.
  5. They did a sleep study on Joel and he stopped breathing 162 times in 8 hours, and this leads the doctors to believe he may have sleep apnea as well. It could be hereditary as Joel’s dad has sleep apnea, but Joel believe it’s the weight gain from the prednisone, so he does not want to pursue getting a C-PAP machine at this time.

While the care at Mayo was the best we’ve ever had, we were confused and frustrated at the results. We put hope in a concrete diagnosis and a magic pill, and when we didn’t get it, we came crashing down. However, now that we’ve had time to process everything, we realize the results are actually encouraging. The idea that there could be no life-long disease like lupus is awesome! And we certainly can’t deny that this could have been a divine intervention – that they don’t see anything that indicates lupus when others did, is amazing. And we know a lot of people are praying!

So for now the game plan is to see more specialists, do more tests, have surgery, taper off the prednisone and see what happens. Time will tell.

And now please sign the attached HIPPA form. Ha-ha, just kidding!

Thank you for all your support and love – the encouraging notes, prayers, and donations. Each of them mean so much to us. We could not go through this without you and our awesome God who is always on our side.

So Here We Are

So here we are, nearly a week after the Mayo consultation. I’m still trying to digest and process all the information I was given there and I still don’t know what to make of it all. I met with my primary care doctor yesterday to get the referral I need for the ear-nose-throat specialist as well as the referral to the immunologist. I asked her what she made of the tests saying that there was no autoimmune disease and she said that it is possible that the medication could make the numbers normal. I realize it is just as likely that I am healed of what ever has been making me sick, but I have to go to the lab tonight for yet another full blood workup before my appointment with the rheumatologist next week. It will be some time before we really have any new information, since the next part of the process is to get off of the steroids.

In the mean time, I’m trying to get back to riding my bike on the stationary trainer each day as well as adjusting to our kindergartener’s new schedule. I know the next few months will be difficult, but I feel that we’ve come to a pivotal point in my diagnosis and treatment, and I am greatly hoping for a return to normalcy soon.

Thank you all for your prayers and encouragement, and please, keep them coming.

I’ve got a golden ticket!

Now that I look back, it’s interesting I titled the main page of this site “living with ???” rather than “living with lupus.” Last week Joel was at Mayo and it was a great decision to go as it provided more answers than we had before. But it also brought some confusion. We have three doctors believing Joel has lupus and one doctor that says he does not. We have one doctor who says the prednisone is saving his life and another that says he should taper off of it so we can see what the real symptoms are. We must admit that we are both tired and frustrated. We put our hopes in a golden ticket that would say you have ______ and just take _______ and you’ll be fine. But that didn’t happen and we both fell hard.

At first I felt ashamed for feeling this way because so many had said they admired our strength and I felt like I let everyone down. But then one friend said it was okay to lay down all our weariness, confusion, and frustration to God. So I did and what I heard was, “My hope is in the Lord.” It’s not in any medical doctors or treatments, it’s in him. My focus is more clearly on him now and I understand more than ever, there may never be a golden ticket. But that’s okay because God is in control and he will take care of us, no matter what. In fact, God is the golden ticket, the magic pill, the whatever you really need! Woo-hoo!

Joel and I are taking the next couple of days to rest and then we plan to start fighting this unknown disease again on Wednesday. He sees a local doctor here to get the referrals he needs for specialists and then sees the rheumatologist on the 11th. We also have a game plan written down. So we rest now, and fight again soon! As always, thank you for the prayers and support! -Kayla

Mayo update #5 – Last one for the week

The doctors at Mayo have been amazing! The amount of tests and specialists he has seen in such a short amount of time is incredible. One good thing is neurology has cleared him – there is nothing wrong with his brain.

The most surprising news of all is that the doctors are not sure Joel in fact has lupus. Three rheumatologists, including one from UCLA, told us he has lupus so that is quite shocking to us. However, there are other diseases they think he might have. We will not know the results of those tests until next week. Also, his blood work does show some concerns with his immune system, but they ran out of time this week to get him to an immunologist. They recommended we find one here locally or go back to Mayo to see one to follow up with the issues.

One major problem is that the prednisone is masking symptoms and causing others (i.e. the tremors) – he needs to come off of it slowly. This is good because it’s such a nasty drug and we don’t like it but bad because it will make him very sick. The doctor said it will be “pure evil” coming off of it. Once he is off it, they can re-evaluate him based on symptoms.

A secondary issue has been found – Joel has severe sinus disease and he needs surgery. They have scheduled it for October at Mayo, but we may have it done here so our insurance can cover it. This is NOT the main problem though so they continue to test for the other possible diseases.

Although the experience was great at Mayo and we’re glad he went, we find ourselves disappointed with no concrete answers at the end of this week. We are praying fervently that the results that come in next week will show something that provides definite answers.