Coping with Chronic Illness: Things I have learned on my Quest for a more Peaceful Life.

I wrote this back in January of 2008. Our local hematologist at the time, like this so much that he gave copies of this article to his students.

Coping with Chronic Illness:Things I have learned on my Quest for a more Peaceful Life

Coping with chronic illness is a challenge for the entire family. While it affects each member of the family differently, no one is spared. Each family member has different needs. Needs, that if not addressed, can throw the entire family into chaos. Using active coping strategies can decrease stress and improve the psychological health of every member of the household. As a parent of two children with Shwachman-Diamond Syndrome (SDS) and secondary mitochondrial disease, I have learned that there are many things that I can do to relieve stress and help the entire family cope. Limiting the effect of the stress from medical appointments and procedures will enhance the well-being of each member of the family.

Parents Must Take Care of Themselves

In order to be effective parents, we must first be able to understand and cope with the diagnosis ourselves. Before we can help our children, we must be able to help ourselves. The outlets we find and the tools we use are essential to living a full life amid the daily medical routines. Once you have taken care of your child's medical needs and cared for your other children, you must also take care of yourself. I cannot emphasize this point enough. This includes taking time to relax or doing something you enjoy.

If you, as a parent, become ill or unable to care for your child, who will care for your child? Do not feel guilty about doing things that make you feel better and enhance your well-being. Take a friend up on the offer to watxh the kids so you can grab a cup of coffee or relax. So many times, I have been guilty of thinking, "Well, I could use a small break from dealing with medical bills, insurance and doctors, but I don't want to use up all of my favors now. What if my child goes to transplant, what will I do then? Who will help in the future if I take my friend up on this offer now?" I finally started taking my friends up on their offers to help, and I am a better parent for it. We do not know what the future holds for any one of us and we need to trust that our friends understand our struggles. We need to take the time to recharge in the here-and-now so that we are able to care for our family in an effective way. These small breaks have gone a long way in improving my ability to cope with the daily medical challenges of SDS and mito.

Lastly, do not be afraid to educate yourself about your child's illness. Research and ask your child's doctors questions until you fully understand all aspects of the disease. As a parent, you need to have a good understanding of the disease not only to make important treatment decisions, but this knowledge will enable you to help your child cope, as well.

Try to Maintain Routines as Much as Possible

First, we must realize that our normal may not be normal for any other family. It can be difficult to maintain family routines amid appointments, hospital stays and home treatments. The urge to give our children the perfect "normal" life at all cost can sometimes drive us to make unhealthy choices. Do not be afraid to say "No."  If your children miss a play date, a birthday party or an activity at school, the world will not come to an end. If you are not able to volunteer at church or school, the world will not stop spinning. Adding extra jobs and extra activities creates extra stress that may not be in the best interest of creating peace in the household. 

I have learned that everyone misses out on activities at one time or another. These challenges can be a good learning tool and character builder for children. These unfortunate events can make us stronger and more compassionate. I have seen many positive character traits develop in all three of my boys over the years that we have been dealing with our medical challenges. We not only try in vain to give our children the perfect "normal" life, we sometimes try to achieve perfection in all facets of our lives. One thing living with chronic illness has taught me is that we are far from living in that elusive land we call "perfect". On noghts we have to hook one of the boys up to their medication pump, you might find that our kitchen looks like a bomb exploded in the sink! When staying up all night with a sick child or spending time at the hospital, I'm doing well to get the clothes washed....forget folding! Clean clothes are about as close to perfect as I can get. I have learned to live the saying: Don't sweat the small stuff.

Connect with Others 

Do not be afraid to join a support group. You are not weak because you reach our for support from others. We all have a need to be understood. Sometimes, the best place to find the understanding support you need is among a group of families who are battling the same challenges. Sharing experiences and information with these families can be cathartic, energizing and enhance your well-being. I am stronger because of the friendships I have developed through the SDS support group. I no longer feel as if our family is battling SDS alone and I have found a place here I am free to discuss all aspects of the disease and how it affects me and my family.  My children have also developed friendships with the other SDS children they have met through the support group. I have seen how knowing others with Shwachman-Diamond Syndrome has helped them feel less alone as they cope with the effects of their illness.

Take Care of Your Spiritual Needs

In the midst of taking care of our physical bodies and those of our children, we can forget that we have spiritual needs. It can be difficult to find time to reflect or to pray amid a normal our normal routine.  The added stress of chronic illness can make it seem as if having a spiritual life is an unattainable reality. Taking the time you need to develop your spiritual life can have a great effect on your ability to cope with adversity. If you are having trouble, do not be afriad to contact your pastor for counseling and spiritual advice. When we effectively balance taking care of our spiritual needs and our physical bosied, we can achieve harmony and find peace in the midst of the chaos.

In ending, I want to point out that there are o right or wrong answers. We all cope with stress differently and we must do what is best for ourselves and our families. Take the time to find active coping strategies that relieve stress and enhance well-being. 

SDS Support Group on Facebook: https://www.facebook.com/groups/ShwachmanDiamondSupport

Bone Marrow Biopsy Day, What to Expect, How to Survive

I first wrote this in December of 2007 for AC, which no longer exists.

Bone Marrow Biopsy Day

What to Expect, How to Survive

One of the most common questions parents of a newly diagnosed Shwachman-Diamond Syndrome child ask is, "What can we expect when our child has a bone marrow biopsy?"

Most hematologist/oncologists perform the bone marrow biopsy (BMB) at the same time they perform a bone marrow aspiration (BMA). If you are unsure whether or not both a BMB and a BMA wil be performed at the same time, be sure to ask your child's doctor. Protocol for BMBs vary from hospital to hospital, but the actual BMB/BMA procedures themselves are the same. Some hospital protocols will allow one parent to stay in the OR or procedure room while the BMB is being performed, while others will allow a parent to remain in the rom until the child is put under.

Your child will be required to fast prior to the BMB procedure. Some doctors will allow clear liquids up to sic hours prior to the procedure, but this also varies from hospital to hospital. Be sure to ask your child's doctor what time to begin the fast and about clear liquids. You will also need to ask which medications your child will be allowed to take the morning of his BMB. You will likely be asked to arrive approximately two hours prior to the procedure. After you check in with the nurse or front desk, your child will have an IV placed and blood drawn for routine labs (or any extra labs that may be necessary). Some hospitals may require a pre-operative appointment before the BMB.

Soon after your child's IV is placed, you'll be asked to escort him to the OR or procedure rom. The anesthesiologist will go through a list of questions and examin yor child. At this point, your child will be put to sleep and you will be asked to leave the OR if hospital protocol so requires. The procedure takes about twenty minutes total.

The biopsy site, usually the iliac crest (in the back, just above the hop), is first cleaned with Betadine or something similar. The hematologist wil then inject a solution of Lidocaine aroud the biopsy site. The bone marrow aspiration needle with stylet is then inserted, penetrates the bone and enters the bone marrow cavity. The stylet is then removed and marrow extracted using a syringe. Once the marow is extracted, the needle is removed. For the biopsy portion of the procedure, a different needle is used. Once the biopsy needle is inserted and hits bone, the stylet is removed. The biopsy needle is then moved in an alternating clockwise-counterclockwise motion. The biopsy needle reminds me of an oldfashioned corkscrew! Once the biopsy sample is obtained, the nurse or doctor will apply gauze to the site with pressure to stop any bleeding. A sterile dressing is then placed over the biopsy site and should remain in place for 24 hours. Following the procedure, your child will be moved to the recovery rom. Once he starts to wake up, you will be called back to be with him.  Once he is able to sit up and drink, his IV will be removed and you will be discharged shortly thereafter.

Your child will likely be a bit unsteady on his feet at first, but that will improve quickly. The biopsy site will cause him to have mild to moderate pain for a day or two following the procedure. The doctor will give you instructions on what medications can be used for pain management. My boys have had some 25 plus BMBs each and we have never had any complications arise. If you notice excessive bleeding or the biopsy site seems to be infected, contact your child's doctor immediately. 

Survival Tips

Over the years, we have developed what we call our "Bone Marrow Biopsy Day Strategy". Hopefully, some of what we have learned over the years will be of help to you. 

If you have a child who has never had an IV placed or who is afraid of getting an IV, you can request a special numbing cream such as EMLA be used. The cream is placed on potential IV sites one hour prior to the IV being startd. Keep in mind that some children might find it worse using EMLA because of the hour waiting with the EMLA causes them anxiety. My youngest would panic the entire time the EMLA was on, which made BMB day worse for him. 

The night before the marrow biopsy, we usually allow our boys to stay up later and allow them to eat something just before bed. This helps because they will sleep until just before leaving for the hospital and won't miss not going through their regular breakfast routine. We also remember to bring along some of their favorite snacks and driks to the hospital so that they can eat as soon as the doctors allow. Some hospitals will offer your child a breakfast or lunch tray after the procedure. 

Bringing stuffed animals or a favorite toy along is also very helpful. If your child likes to play doctor, a toy doctor's bag with pay doctor tools can be a great coping tool. Some hospitals will give children splints, tape, IV tubing and other goodies for your child's doctor bag. It can never hurt to ask. Keep in mind that some hospitals will not alow any personal ites in the OR, while others will allow one or two. You'll need to check hospital policy ahead of time, so as not to cause your child any undo stress if his favorite toy can't come along with him to the OR for his procedure. 

If you have a child who has to have repeat bone marrow biopsies and he is scared, you might consider purchasing an anxiety workbook to help your child cope with medical procedures. You can even make your own "Bone Marrow Biopsy Day" book. We made a book when my kids were little and had it published later. Several child life departments use the book, too! Children want to know what happens while they are asleep, and taking pictures is a great way to show them. In our case, we have taken many pictures over the years and also had a wonderful doctor who took pictures for us during the entire procedure. Our book was a hit not only with Child Life, but with the entire staff! Many signed a copy my boys brought with them to their bone marrow biopsies. 

For many children, like those with Shwachman-Diamond Syndrome, repeat medical procedures is a normal part of life. As parents, we can help our children cope by preparing ourselves and equipping the with the tools they need to cope.

You can order my book for the Nook here.

Here is a video I put together from one of my boys' BMB days:

Here is a interactive online game that helps children discover the role that bone marrow plays in the body and why bone marrow aspirations and biopsies are important http://bonemarrow.starlightprograms.org/

Tweetfest: March for Life #WhyWeMarch #MarchForLife

If you can't join your fellow Americans in DC for the January 22 March for Life, you can join us on Twitter. There will be a TweetFest all day using the hashtags #MarchForLife #WhyWeMarch

Here is the doublesided sign I made for the march on Thursday.

Front:

Back:

Life After #Obamacare

Life for families of chronically ill kids in the post-Obamacare world is miserable. Aside from layoffs, doctors quitting or retiring, longer waits and decreased quality of care, many families are being bankrupted. Obamacare is causing employers, insurance companies and providers to cut costs in response to the exponentially increased costs imposed upon them because of Barack Obama's namesake law, Obamacare. These cost cuts most often affect the sick. While feminists are wailing that their $9 month birth control isn't "free", sick people are losing access to life-saving medications so that the companies can pay the extra millions required to give these women their "free" birth control. 

I refuse to call it the "Affordable Care Act" because it simply is NOT affordable. Our family's insurance premiums have increased over $2,000/year when the president promised the law would decrease premiums by $2,500/yr. Our deductibles, copays and out of pocket max limits have all increased. If one million women now get "free" $9 birth control. That's $9 million a month, $108 million a year the insurance company now has to pay out that it didn't have to pay before. Where do you think the insurance company gets the money to pay for that!? Increased premiums, copays, deductibles and out of pocket maxes. It's simple math. What about the free sterilization surgeries? Exponetially more than "free" birth control.  

What's even worse than all of that? It's not bad enough that we have to deal with two chronically ill kids, upcoming surgeries and medical procedures, we are facing losing coverage for their life-saving, life-changing medications. I keep getting notices that we need to refill the $700 medication I keep harping on. Trouble is that we don't have $700 to pay for it and we are STILL waiting for the pre-auth. 

Prior to Obamacare, ONE medication required a pre-auth. Their blood product, IGG. Now we have a total of 22 meds that require a pre-auth. Only two of which we know for sure will actually be covered, meaning we win the battle. We assume we will get the pre-auth for the $700 med eventually. The first time it took 2 1/2 years to get it. The pre-auth lasts for a year. So we have to go through this every year and never know if it will go through or how long it will take. 

I'm sitting here after a day of trying to plan my yougest son's next surgery and trying once again to get the proper per auth paperwork sent from the doctor to the insurance company for the other 20 meds. Doctors are overwhelmed by all of this additional paperwork and letter writing. It cuts into the time they have to see and take care of patients. It takes an incredible amount of time and, since I can't just write my own letters to the insurance company, I have to constantly be on top of it asking, calling and getting people to resubmit the proper paperwork.

Imagine trying to take care of your family with sick kids AND worrying about no longer being able to afford the medications they need. That's my post-Obamacare life. Well, that and worrying about losing employer benefits and being dumped to the exchanges which would mean losing all of our children's Shwachman-Diamond  and Mito specialists......and losing access to life saving treatments. Literally losing access to life saving treatments.

SDS kids who go to regular transplant centers have a 50% chance of survival. If they go to Cincy or Seattle, it goes above 90%. If dumped to the exchanges, we lose access to the latter. They aren't included in the networks offered. Even the $1700 a month plan- 

Obamacare is a nightmare. Obama's entire presidency is a nightmare.