Upcoming Surgery

Joel is pushing through some rough days right now. He is scheduled to have a microdiscectomy on November 18 at CU in Denver (Anshutz Campus). Thankfully, the chief of neurology is doing his surgery. But unfortunately it means he is off some of his regular medications now and after the surgery for awhile. So his pain and swelling is higher than normal, which is already pretty high. We tried several different kinds of treatments before making the surgery decision, but none of them gave him the relief he needed. It’s not only painful but he has a hard time walking and his leg goes numb quickly while standing.

It is a minimally invasive surgery, but the recovery time is six weeks, including two weeks of no driving. Also being an autoimmune patient means the risk of infection is great. So we would love your prayers for a successful surgery, quick recovery, minimal pain and swelling and no infections. I would also selfishly ask for your prayers as now is a crazy busy time for me at work and I’ll have to figure out how to get kids to school and back, keep the house decent, laundry done, cook (and we all know how good I am at that), etc. etc. Sorry friends and family but optional things like Christmas cards just might not get done this year. Probably more importantly, I need to tell myself that things like that are okay not getting done. My type A personality wants to fight it though!

I will keep you updated on how the surgery went as soon as I can. Thank you all for your love, support and prayers. It means the world to us!

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Fully Favorable!

By Kayla

The last few weeks I’ve been applying to organizations for assistance with medical bills. It’s a long, tedious process and I’m thankful for my sister-in-law, Michelle, who helped me research them and encouraged me along the way. After a recent denial, she reassured me God would provide. I knew this in my heart but sometimes the down moments leave me frustrated and overwhelmed.

On Wednesday I spoke with a hospital bill representative who was not very nice about a large bill we have that we’ve been making payments on. When I hung up the phone with her, I said, “Well you should know my God is awesome and big and he can do the impossible!” Despite my courage with her, the tears flowed after I slammed the phone down. Again, not my best moment.

Just a day later, yesterday, I came home and checked the mail. In it was a letter from the social security disability department where a judge found Joel’s case FULLY FAVORABLE (i.e. APPROVED!) without a court hearing and effective six months after his disability date of January 27, 2012. This is the exact same day Joel went into the hospital for the second time! We had previously been told ss disability was very rarely approved without a court hearing. But like I said, MY GOD CAN DO THE IMPOSSIBLE!

It will likely be a few months before we receive the funds but if you can join us in prayer, we are praying it will pay off two of our large, unsecured debts and all our medical bills. And once we receive the monthly checks, we believe we can once again budget and make ends meet. Praise God!

Now on to a Joel update. He’s pretty much still in survival mode from day-to-day. I often hear, “everything hurts” or “why does it hurt all the time?” Basic things like taking a shower, driving the car or going down the stairs can be difficult for him. But we are still very thankful his medicine has stabilized his liver, which keeps him out of the hospital. He sees the neurologist at CU in a couple weeks and he will determine if he will have surgery on his hip/sciatic nerve. We had hoped for surgery but the injection they gave him this last month was supposed to be indicative of whether or not surgery would work and unfortunately, it only relieved his pain for about 3-4 days. It’s supposed to be 3-4 months. Without surgery or injections, all they can really do is continue pain meds.

Also, in the last month, Joel was in the ER for kidney stones and ocular migraines. He lost his vision in both eyes for awhile one Saturday. He’s lost vision several times before, but it was due to the medicine he was on at the time. He isn’t currently on any medicine that would do that so the doctors determined it was an ocular migraine.

While Joel is extremely relieved regarding the ss disability, it also carries a certain stigma for him. He struggles with guilt for not being able to work and provide for his family and for relying on the government when others are in need as well. It certainly is a position we do not desire to be in and still pray it is not a long-term one. Also, being “disabled” is not an identity he wants and he works hard at not letting his illness be his identity even though it consumes him. He knows his identity is in Christ.

One thing I love about Joel is that he doesn’t let his illness stop him from dreaming. He still talks about riding his bike up and down the mountains someday or racing semi-pro again. I look at him like he’s crazy but I also admire him for not giving up his dreams.

So we also ask that you continue to pray for his health and our family as we live day-to-day in a constant battle with it. We are crazy thankful for all of our friends and family and your love and support. We cannot express enough how much it means to us. We love you all!

After I leaped for joy in my heart and physically while reading the ss letter, an old hymn the Mennonites often sang came back to me …

Praise God from whom all blessings flow;
praise him, all creatures here below;
praise him above, ye heavenly host;               
praise Father, Son and Holy Ghost. A-men.

We are FULLY FAVORABLE. Yes, in the government’s eyes but most importantly, in our Lord and Savior’s!

3 YEARS

By Kayla Gilmore

It’s been a rough month for Joel as he was fighting an upper respiratory infection – I say “was” because we hope it is gone after two rounds of antibiotics. Unfortunately because he was on the verge of pneumonia, they took him off some of his other meds to try to kick the infection, which caused him to have more pain. Thankfully, he’s now back on his regular medicine.

Some of Joel’s pain is from nerve damage from two bouts of viral meningitis, most pain is from his two autoimmune diseases and some pain is from a bulging disc sitting on his sciatic nerve. The doctors first option is to pump him full of steroids, which as we know, causes all sorts of organ damage and would likely end his life sooner rather than later. We have told the doctors we’ll only do steroids again when it is a life-threatening situation. So the doctors are recommending an invasive surgery to shave the bulging disc. They’ve told us before they won’t do any non life-threatening surgery on Joel because of the risk of infection, but they know he’s been struggling with this hip pain for years and believe it will help. So, Joel is scheduled to see a neurosurgeon at CU in Denver in July to schedule surgery. I’ll keep you up to date on what happens with this. Other than that, he’s been maintaining his regular doctor visits and blood work. He sees his primary doctor, rheumatologist, neurologist and hepatologist quite often.

Next month marks the 3rd anniversary of Joel being sick. It’s been a LONG battle and we grow weary at times, but God is good and blesses us with so many things, including our very supportive friends and family. I plan to do some sort of Winning the Battle party at our house for him to celebrate his battle for the last three years in July. If you don’t live near us and can’t come to the party, here are some ways you can participate.

1. PRAY. As always, we covet your prayers. Specific requests can be for his upcoming disc surgery, fatigue, joint pain and swelling, constant rash on his body, hip pain, infections to stay away and liver function. It’s also very difficult for him emotionally – as he wants so bad to do regular things healthy people can do but he just can’t. And the days when the pain is overwhelming and he can’t do anything are the days he feels worthless – and who can blame him? We also ask that you pray for our financial situation with all the medical bills and that social security disability comes soon, very soon.

2. ENCOURAGE. Feel free to send Joel a supportive card, email or text. He would love to hear from you! Here’s his info:
Joel Gilmore
232 Sugarbin Court
Longmont, CO 80501
reveloonline@yahoo.com
720-233-3572

3. DONATE. Our friends and family have been so supportive the last three years, from doing a benefit bike ride to us receiving blessings in the mail, that I have not had to do a blanket ask for help with our medical bills. We are incredibly thankful for this. But as time goes on, the bills continue to accrue and we’re at a point now where even the minimum payments on medical bills are difficult to pay. So should you feel led, please click on the Donate tab on this page to get info on how you can help. Thank you so much for your support!

As our pastor said in a staff meeting this last week, things can always be better and things can always be worse. Perspective can be everything sometimes. Also, we know so many of our other friends and family who are struggling through chronic illness, divorce, addiction, etc. If we can pray for or do anything for you, please send me your request at kaylajogilmore@hotmail.com.

Prayer Fire

By Kayla Gilmore

I just got a new marketing and communications intern at work and I’m really excited about him being on the team. Our church interns aren’t paid but we find host families for them to stay with. My boss and I searched for a few months, asked some people and had no luck finding him a place to stay. Finally, we were down to two weeks before his arrival and I was starting to really worry because his internship was contingent on us finding him a place to stay. So I asked some people to pray and I started praying even more fervently than I had before. About 5 days after I put what I like to call “prayer fire” on the matter, we found a place for him to stay!

This situation reminded me that I need to do a few things. First, I need to worry less and pray more. I need to pray more specifically and I need to ask for prayer when I need help too. I know many of you are praying for us on a daily basis and I want you all to know that we feel them and so appreciate them.

So I’m giving my worry back to God for about the millionth time (somehow I keep taking it back). And I’m asking you to pray for the following for us with fervent prayer.

1. Joel’s health – some days are better than others but most days are rough. His medicine helps, but don’t always take the pain away. His joints are swollen, he has extreme fatigue and it’s hard to fight off infections. When a day is particularly hard, it’s difficult for him emotionally because feeling sick 24/7 wears on him. I tell people if you think of how you feel when you have the flu, that’s pretty much how he feels all the time. Please pray for healing, physically and emotionally.

2. As of March 3, our “case” is on the social security disability desk. They have 12 months from that date to schedule a hearing. It’s been 2 ½ years since Joel was able to work and we’ve had major debt accrue because of it, so we need the disability to come in ASAP. Please pray it is approved very soon.

3. Our medical bills and prescriptions are continual and sometimes overwhelming. Please pray for financial resources to cover these.

4. Finally, I just ask you pray for our family. Our boys are awesome but it can be difficult on us all when we have to adjust our plans on how Joel is feeling and watch him suffer so much.

Again, thank you for your prayer fire! We can’t even begin to tell you how thankful we are for it! And we are here to share your burdens as well so please don’t hesitate to ask us for prayer for you too. If you’re going through a difficult situation, it is hard and we never compare ours to that. We are here to lean each other!

 

About a nose and a spine …

What’s this? A timely update! Yes, don’t fall over, but here’s an update just four days after our doctors’ appointments. And yes, I said OUR. Since this is a health blog and I could use some extra prayer, I thought I’d include a note about me too.

Joel and I both had doctor appointments on Thursday that didn’t go great. I saw an ENT surgeon who is recommending I have surgery on my nose to fix a few things (no, not plastic surgery although I could do that at the same time if I wanted). Oddly, for a variety of reasons, people can develop holes in their noses. I was born with a small one and then had an accident when I was younger.

Sidetrack story for your entertainment – I was about 8 when I was getting out of our family’s van. Unbeknownst to me, my foot got caught in my little sister’s jacket string. I jumped out of the van and fell headfirst into the gravel rock driveway. I got a few stitches on my nose and the widening of the hole began. Weird, I know. But then again, I am the girl who also cut two fingers off and ran into a brick wall while playing four square.

Anyway, I checked on it a few times when we were in Las Vegas but it was small enough to not have to deal with surgery. But now it is the size of a nickel, I have a deviated septum and some other blockage so it’s hard for me to breathe, especially at night. The ENT here has recommended surgery. You’d think not being able to breathe would be a no brainer but it’s a four-hour, complicated and rare surgery that requires a nose cast for 1-2 weeks. Yes, I said nose cast. Ugh. So I contemplated not doing it but a couple guys in our small group recommended the deviated septum surgery and last night I had a very difficult time breathing, so I guess I will go ahead with the surgery. Ironically, I have to be cleared by a rheumatologist to make sure I don’t have an autoimmune disease (which is another reason you can get holes in noses) before the surgery. I am confident that I do not have an autoimmune disease, but I told Joel if I do, we’ll throw up our hands and move to Fiji.

I’m still trying to figure out the best time to have the surgery, but I’ll keep you posted when I do. I’m going to need a lot of prayer for that one. Okay, you can let the nose jokes commence now.

Since I wrote last, Joel has seen the neurologist, immunlogist and rheumatalogist. The neurologist did not recommend surgery on Joel’s herniated disc that is pushing on his sciatic nerve, but did recommend oral steroids for Joel’s overall case. To which we said no to because of the terrible effects of them. Then he suggested steroid shots, which we again said no to. We know that with Joel’s already compromised immune system, his life would be severely shortened by long-term steroid use. Plus, the side effects when he was on it were almost unbearable. Prednisone can be a life-saving drug and helped Joel with some of his symptoms, but we’ll save it for when we absolutely have to do it.

The immunologist ran some labs and found the usual immune markers off. Not much we can do about that though. Thankfully, one medicine he is on, controls his immune system enough to keep his liver functioning well enough. The important info came at the rheumatalogist. He suggested Joel have the surgery on his spine, which we probably won’t do at this time. But he also said there’s a disease commonly associated with Joel’s psc (primary sclerosing cholangitis), called ankylosing spondylitis (an auto-immune disease of the vertebrae). He said one way to know if Joel has it is to give him the medicine for it and see if it works. But it’s a “heavy hitter” so you don’t want to take it if you don’t have that disease. The medicine comes in a syringe of .8 ml. Each dose is $1,200 and it’s given twice a month. Thankfully, the doctor gave him samples and said if it works, we will have to apply to insurance to cover it. I told our small group I wasn’t sure if I should pray if it works or not. I do pray Joel’s pain is gone, but the medicine working means he does have the ankylosing spondylitis and it has some damaging side effects too. The doctor said it would be a week or so before we knew if the medicine works or not.

It has only been four days but today Joel showed me his hands could make a fist. Something he’s been unable to for two years! The jury is still out and I can’t honestly say whether or not I am okay with another disease and drug, but if it helps relieve some of his pain and we can deal with the side effects/long-term damage, then it’s worth it.

We continue to be amazed at God’s blessings for us on this long journey. We have our ups and downs, but he is always faithful. And we sincerely appreciate the support and love from our friends, family and church. Our faith and you is what keep us going.

-Kayla

 

Hello CU!

By Kayla

Wow! It has been too long since I posted an update. Sorry about that! I did post on Facebook about Joel’s recent diagnosis, but it’s easy to miss a post.

Per Mayo, Joel saw the chief of hepatology at CU in Denver. We loved the doctor and staff, the hospital and whole experience at CU. If it’s possible to love a hospital, we did! Having quality care and ease of administration really helps when you already have to deal with being sick. And the best part is we can continue to go to CU and not have to go back to Mayo again. Not because we didn’t like Mayo, we’re just a lot farther from it now. The Mayo doctor did say we were in a lot better place for medical care, which helped confirm for us one of the reasons we moved to Colorado. But let’s not go too far, this Husker alum will never root for the CU Buffs. If you’re reading this Chad Dubbe, sorry!

After talking with Joel and getting his records, the CU doctor called to say he is “confident that Joel has PSC – primary sclerosing cholangitis.” While it definitely helps to have a name to the disease, unfortunately there is no real different treatment from what we’ve been doing. Eventually Joel will need a liver transplant but his immune system will still attack the new liver. They are trying a new medicine on him and the good news is that his liver panels seem to be stabilized. As long as the medicine continues to work, we can wait on the liver transplant. Furthermore, this isn’t the first time we heard a doctor say he/she is “confident” on the diagnosis so we’re not totally convinced, although it does seem to fit many things.

The bad news is that Joel continues to have a lot of pain and fatigue despite some of the medications. A majority of days are bad for him, but every once in awhile (maybe like every 2 weeks), he gets an okay day. Both the CU and Mayo doctors recommended Joel see a neurologist for some of the things that showed up on the MRI of his spine and an immunologist because Joel’s immune levels are always low.

Joel put this off for a couple months though. I think mostly because he gets tired of seeing doctors and I definitely can’t blame him for that. But tomorrow, he is going down to the CU campus again to see both specialists on the same day. Please pray for him and his strength to get through it all. I’ll try to keep you posted as we hear new things from them.

In other bad news, we were denied social security disability for the first time a couple weeks ago. We have hired a company to represent us and are now in the appeal phase. 85% of all cases are denied the first time, so it wasn’t surprising for us, just frustrating as it has been two years since Joel has worked. I could make a lot of other comments here about how social security disability works or doesn’t work for that matter, but I won’t. However, we would love your prayer that the appeal goes fast and is approved. Thank you!

And the most awesome news of all is God is good. All the time. He takes care of us in our time of need and he provides great friends and family who support us too. We take one day, one moment at a time and are encouraged by our God and those around us. And for that we are incredibly thankful.

Hard Is Hard

I was recently listening to a talk by a lesbian who was discussing coming out of closets. Yes, I mean to say closets. Her point was that all closets are just hard conversations. The walls of her closet most often happen to be rainbow, but when you’re in a closet, it’s dark and you can’t tell what colors the walls are.  You just know what it’s like to live in a closet. And closets are no place for people to truly live. She made one point that I have been trying to put in my own words for a long time.

Recently I was telling a friend that there are many people going through hard times right now. We have friends going through unemployment, marriage problems, major health issues and more. And often when they share this with me, they inevitably say something like, “I know it’s nothing compared to what you go through on a daily basis.” I usually tell them, “It’s not like that. You can’t compare.”

But this speaker put it into better words. Here it is. “Hard is hard. It’s not relative. There is no harder. It’s just hard.” We shouldn’t compare whose situation is harder. We just need to agree that everyone has hard. Now I know my friends who are sharing with me are just trying to help me feel better or they feel like they are bothering me with little things, but I’m here to say, it’s ok. If it’s hard for you, then I am here to listen and support you. Whose to say my hard is any harder than yours? It’s not. It’s just hard.

Mini-update on Joel: Mayo called this past week and has asked Joel to return to do some more tests and meet with his hepatologist. The doctor did not want to discuss it over the phone. So we will be leaving Thursday morning super early, then Joel has some more tests on Thursday and we meet with the doctor on Friday. We can’t say we’re not anxious because we are, but we are not scared because God has given us peace. And at this point, we’d rather have an answer than not know anything or keep shooting in the dark for treatments. It’s been too long of the unknown. What still astounds me is that the reason we’re being called back is because they got a tissue sample of Joel’s liver that was tested in a Las Vegas hospital from February of 2012! The hospital said the liver was clean. However, we have read the pathology report of the sample from Mayo and they have found “unusual” things about it and they are putting multiple diseases back on the table after reviewing the sample. And we’re grateful that the hepatologist at Mayo took the time and effort to discuss Joel’s case with ALL the hepatologists at Mayo in a panel discussion. It is amazing that 22 months later a different place can have a completely different answer! It’s why I have always encouraged people to seek a second or third or fourth opinion if they know something is wrong. We often think medicine is a science and at some level, it is. But it can also be an art form and they just have to take their best guess. It’s hard. But remember, hard is not relative. It’s just hard.