Introducing Stafford

I am happy to announce that our little Stafford is here! He is a sweet and content baby, and he loves to be snuggled and held. We thank the Lord for this precious gift.

Stafford was 8 pounds, 10 ounces when he was born. He was my smallest baby! It has been fun to have a "tiny" baby for the first time.

We are thrilled to have Stafford in our arms now! We are exhausted too. Life is hard, but we are doing pretty well, and we are adjusting to life with a newborn.

William and Adelaide are great as big brother and big sister. They are a help to us, and they love to hold their baby brother. Stafford loves to spend time with them too.

Will continues on with law school, work, and taking care of his family. He is sleep deprived, but somehow he manages to keep things running here at home. Thankfully the end of the semester is coming up soon, and the break from school will enable Will to get more sleep. We are really looking forward to summer when he won't have homework to do every night.

My recovery is going as well as can be expected. I am very tired, and I don't think that will go away anytime soon. My doctor's orders are to do nothing but rest, recover, and take care of my baby. So for now I am mostly just eating, sleeping, and feeding Stafford. It's an exhausting, wonderful, hard, and happy life.

I had a C-section with Stafford, so I was in a lot of pain for the first two weeks. I still have pain, and will for quite some time, but it isn't too bad anymore. The nice thing about having a C-section is that my body doesn't get exhausted from labor and delivery. This allows me more time to hold my baby and enjoy him in the newborn stage. I get to wear myself out taking care of a baby instead of wearing myself out going through labor.

So far I have not had a bad crash, and I am thankful for that. I know it will become much harder for me to take care of Stafford once he is mobile and no longer sleeping all day. There are probably still some very hard days ahead. I'm trying not to think about that for now. I'm trying to take it one day at a time and enjoy these moments as best I can.

I love holding Stafford and taking care of him. I am thankful that I have been able to do quite a bit of the baby care so far. I can feel my arms and legs becoming weaker from all of the exertion, but it is worth it. And whatever crash may come -- this baby is worth it.

God has been so good to us. He has blessed us with another child, and He has provided the extra help we need. My parents were here to help out when Stafford was born, and they will be coming again this spring to help out for a while. Our church and friends have provided help as well. As my needs increase there are some who are willing to step in and help out more.

And you, dear readers, have been an encouragement to me. Thank you for your prayers and support during this time of welcoming a new baby into our family.

I won’t be able to blog again for a long time, but I do hope to share short updates on Instagram and Facebook. You are welcome to check in with me there. You are also still welcome to email me. I do appreciate every email, but I likely won't be able to reply, and I thank you for understanding.

I don't know when I will start blogging again, or if I will be able to write regularly once I do start writing again. If you would like, you may subscribe here so that you receive an email whenever I publish a new post.

I am thankful for you, dear reader and friend. Thank you for being here at Cranberry Tea Time. Thank you for sharing in the joy of the birth of Stafford!

Preparing for Stafford: The Hard Stuff

Preparing for Stafford has been a joy and a challenge. It has been filled with laughter and tears and prayers. We don’t know what lies ahead, but based on what we know of my health from the past 19 years, the months ahead will be exceptionally hard. Over the past eight months we haven’t just been preparing for a baby; we have been preparing for a health crash.

If you have been reading here for many years, you may remember that I crashed badly after Adelaide was born. My health slowly deteriorated until I was bedridden for 20-23 hours a day for a few months. Recovery from that crash took three years, and despite all of my efforts to exercise and rebuild strength, I have never been able to recover to the level of health I had before Adelaide was born. And anytime I push myself too hard, my energy levels plummet again.

Currently I can be out of bed for 5 hours on a good day. After that, I have to borrow spoons from the next day to stay up longer. If I borrow spoons too many days in a row, then I crash, and it can take months, or even a year, to recover. Because I am starting off with less physical strength and endurance than I had when I was pregnant with Adelaide, it is likely that recovery from delivery will be harder this time around, and it is likely that a crash will come sooner than it did before.

Stafford at his 19 week ultrasound

One of my most debilitating symptoms is post-exertional malaise. This means that it takes my body much longer to recover from exertion than it should. If I go to church on a Sunday morning, it can take a week for me to recover from the noise and physical exertion. If I do a lot of walking around the house one day, I will have to spend the next day in bed. Pushing myself too hard with exercise doesn’t increase my strength, it only takes away my energy in the long run. Something is wrong at the cellular level, and my body doesn’t recover as it should when I rest and sleep, but, of course, not resting and sleeping only makes things worse!

On Monday I shared about some of the things I would be stepping away from after Stafford is born. And yet, even with all I am cutting out in order to have more energy to give to Stafford, I am well aware that apart from a miracle, I will not be able to take care of Stafford on my own. This has been my biggest grief during pregnancy. 

A glimpse of Stafford's face at his 33 week ultrasound.

For right now I am able to take care of Stafford. When I eat, he receives nourishment too. Simply by being pregnant I can keep Stafford warm and safe and protected. For 9 months I get to have him with me all the time, and I love that. Pregnancy is very easy for me compared to taking care of a newborn or a toddler. I do look forward to meeting Stafford, but I wish pregnancy could last longer because I am not ready to let my baby go. It is hard to hand a newborn over to someone else to take care of. 

Even with all that is hard, there is so much gratitude as well. I have lost babies through miscarriage, and I am thankful that Stafford is still with us. My heart aches for my friends who have had to say goodbye to their children too soon. My heart hurts for those who want a child, but have not been able to have one. I know that I am very blessed to have a baby on the way. Stafford is a wonderful gift from God. I am grateful for this precious child, and I definitely want him to be part of our family! There is grief, but I am trying to keep it all in perspective. I know there will be joy and happy days in the midst of the challenges.

Little Feet

Some days I am sad about the struggles and losses that are likely soon to come. Some days I don’t think about it at all, and I just enjoy being pregnant. I pray often for help and peace and strength. I pray for the ability to take care of Stafford, and I pray for humility and contentment if that is not to be.

I am trying not to worry. Most days I succeed; some days I don’t. I am trusting that tomorrow there will be grace. I’m not scared of the future. I’m just not looking forward to the physical deterioration. The increase in muscle weakness and brain fog and frailty will be unpleasant. But mostly I’m just sad about not being able to take care of my baby and my family in the ways I wish I could. 

Will you please pray for my family and for me? Please pray that:

• We all stay healthy and do not catch the flu or some other virus.
• Stafford’s birth would go smoothly and safely.
• My recovery from delivery would go well.
• The Lord would strengthen Will for all He has called him to as a husband, father, paralegal, and law student.
• William and Adelaide would be at peace no matter what happens with my health.
• The Lord would give me strength to take care of my newborn son.
• I would be humble and content if He chooses not to increase my strength.
• The Lord would provide the practical in-home help we will need.
• The Lord would give strength and endurance to those who choose to walk through the coming months and years with us.
• I would keep my heart and mind focused on Christ.
• I would trust God no matter what comes.
• The joy of the Lord would be my strength.
• I would rest in today's grace and mercy with no fear of the future.
• I would glorify the Lord in this life to which He has called me.

I know that the Lord is good and that His plans for me are for my ultimate good, even when life seems overwhelmingly hard. And I know that I can trust Him with all of this, but it is still hard. Thank you for your prayers.

Travelling with a Chronic Illness

Last year we made a trip to Arizona and back. There were times leading up to our departure when I thought we must be crazy for attempting such a huge trip with my physical limitations! But we needed to go, so we planned and prepared, and we made it work.

I promised to share a blog post with tips for travelling with a chronic illness, but last summer tired me out, and I never managed to get the post written. This year I am writing a travel tip post before the long days and weeks of summer tire me out. If you have a chronic illness and are planning a trip this summer, I hope that some of these tips will be beneficial for you.

9 Tips for Travelling with a Chronic Illness

1. Bring all of the necessary medical supplies and assistive devices. 

How do you make a cross country trip when you meet the medical definition of "homebound"? With LOTS of stuff! We brought along my wheelchair, a travel walker, a stool, ice packs, IV supplies, an IV pole, a Roho cushion, and lots of medications, vitamins, and supplements. My medical condition almost doubled the amount of stuff we had to bring for a 4 week trip!

We brought along IV supplies so that I could have an IV every 3 days while we were travelling. Being able to have IVs made sitting up in the car for days of driving much easier than it would have been otherwise. My husband was trained to start IVs several years ago, so doing IVs while travelling is a fairly easy option for us. If you have dysautonomia and need IVs, there may be infusion centers you could go to with a prescription from your doctor so that you can get your needed fluid boost while travelling.

You may need different supplies than I did. Bring what is helpful to you and makes your days easier. Be prepared for the extra fatigue that may come along with travelling, and prepare ahead of time for "bad days" while you are travelling.

2. Plan for days of rest. 

We never drove more than 2 1/2 days in a row. After that we would stop so that I could rest for a day or two before getting on the road again. Riding in a car is exhausting, and the time to rest was crucial. On the days when I stayed in bed to rest, Will and the children would go out exploring local sites. After they came back I got to see pictures and hear all about their adventures!


3. Drive for short periods of time.

On the days when we drove, we often didn't drive more than 4 or 5 hours total. This allowed me to get the sleep and rest I needed on most days.

4. Stay in good hotels.

Hotels don't have to be fancy and overly expensive, but staying in a hotel that has good beds and thick walls is helpful for getting a good night of sleep. Our favorite places to stay are the Holiday Inn Express and the Staybridge Suites. We know that both of these hotels will have comfortable beds and good breakfast food in the morning.

5. Bring plenty of snacks and water.

Be prepared for hunger, thirst, and blood sugar crashes. If there are long stretches of road between restaurants, it is helpful to have food and water on hand. When you have a chronic illness, waiting to find a restaurant can be very hard on your body. The fatigue of chronic illness is difficult enough without adding extra fatigue due to hunger, thirst, or a blood sugar crash.

6. Get as comfortable as possible in the car.

I bring pillows and blankets to make the ride more comfortable. I also partially recline my chair so that sitting up doesn't take quite as much energy. Because blood pools in my legs when I am sitting, I have to keep my feet propped up while in our van. I either put them on the dashboard, or I tuck them up on the seat with me. It isn't the safest position to be in, but I physically cannot sit straight up with my feet on the floor for more than about 15 minutes. 


7. Enjoy the view from your vehicle.

Enjoy the scenery as you drive! If you are too tired, don't step out of the car at scenic viewpoints. Just enjoy the view from your car and save your energy. I sometimes take pictures through the van window instead of getting out of the vehicle for pictures. In fact, I often take them while we are driving! This allows me to enjoy the scenery and taking pictures without adding extra time to our trip.


8. Visit national parks.

I have discovered that national parks are one of the best places to go on vacation if you have a chronic illness or disability. There are wheelchair accessible trails that allow you to enjoy the outdoors in a way you might not be able to on typical hiking trails. There are also usually scenic drives that allow you to enjoy the beauty of nature without having to get out of your car if you aren't up for that much physical exertion. National parks have air conditioned visitor's centers and small museums that are wheelchair accessible. They are also usually very quiet, which is helpful if you get migraines or sensory overload.


9. Get an Access Pass if you qualify for one.

If you are a United States citizen with a significant and permanent disability, you qualify to receive a free Access Pass! This pass will give you entrance to any national park or federal recreation land, and you can also bring up to 3 other adults in for free with you. Children under 16 are always free. You can learn more about the Access Pass here. If you don't qualify for an Access Pass, there may be another type of discounted pass you could use.



What are your best travel tips?  If you have a chronic illness, what makes travel easier for you?

Dysautonomia Awareness Month

Photo Credit: DINET

October is Dysautonomia Awareness Month. On October 1, Niagara Falls was lit up in blue for dysautonomia awareness! It is exciting to see more attention given to this condition that is devastating for so many people. We have a long way to go, but it is good that awareness is spreading for dysautonomia.

Image Credit: Reflections of a Bear

Dysautonomia is an umbrella term used to describe the dysfunction of the autonomic nervous system. There are many different types of dysautonomia, and this infographic shows some of the illnesses that fall under the category of dysautonomia.

The autonomic nervous system controls everything in the body that you don't have to think about such as heart rate, blood pressure, circulation, temperature regulation, digestion, sensory perception, energy production, and more. When the autonomic nervous system does not function properly, these processes can become impaired.

One of the most common forms of dysautonomia is POTS. The Mayo Clinic estimates that 1 in every 100 teenagers has POTS. Though many people haven't heard of it, it is actually fairly common. "POTS might be the most common medical condition that no one has ever heard of."

Despite the fact that POTS is common, there is often a long delay between the onset of symptoms and the diagnosis of POTS. A recent survey showed that the average diagnostic delay is 5 years and 11 months. Before receiving an accurate diagnosis, 59% of patients are told that it is "all in their head." Even though POTS is common, 27% of patients had to visit 10 or more doctors before a correct diagnosis was made.

My POTS

I first developed obvious symptoms of POTS when I was 14 years old. I was diagnosed with Neurocardiogenic Syncope (NCS) when I was 15, and the POTS diagnosis came shortly after that. This was in the 1990s when it was very rare to receive an accurate dysautonomia diagnosis so quickly. I am grateful that I had parents who believed me when I said that I was sick, and who did not believe the doctor who said I was making it all up.

Over the years my health has gotten progressively worse. I do still fit the POTS category, but POTS no longer totally describes my dysautonomia. For this reason, my doctors typically say that I have "dysautonomia" as a diagnosis because that covers the broad variety of symptoms I have. Because of the severity of my illness, the progression of symptoms, and the lack of response to treatment, several of my doctors believe that I have a mitochondrial disease as a root cause for my dysautonomia.

When I saw Dr. Cohen several years ago, I asked him if he believed I had a mitochondrial disease, and he said, "Definitely. The question is: can we prove it?" We may never know why I have dysautonomia or why my condition has been progressively getting worse. We may never be able to prove that it is a mitochondrial disease. But, perhaps, with more awareness, research, and advances in testing, we might find an answer one day!

If you want to know more about how POTS and dysautonomia affect me, here are some blog posts that explain more:

• Fighting Against Gravity
• A Day in the Life
• Dysautonomia
• Frequently Asked Questions

For Further Information

If you want to learn more about POTS, here are a couple of good articles:

• POTS Overview
• Postural Orthostatic Tachycardia Syndrome

If you want to learn more about dysautonomia, I recommend visiting:

• www.dinet.org 
• www.dysautonomiainternational.org

Happy Dysautonomia Awareness Month!

My TiLite Wheelchair: One Year Later

Last year I got a new wheelchair, and I had so much fun choosing the color and picking out light up wheels! There were also many other decisions that had to be made regarding my wheelchair needs. Before making my final decisions, I did a lot of research and asked several friends about their personal wheelchairs and recommendations.

I ended up choosing a TiLite Aero R wheelchair for both looks and function. I have been very pleased with this new wheelchair, and I would like to share some more specifics about this chair with you. I know that many of you have various chronic illnesses and disabilities, and I hope that this information will be helpful for those of you who need to make a wheelchair purchase.

This is my TiLite wheelchair as it was originally put together. The seat had a two inch "dump." This means that the back of the seat was two inches lower than the front of the seat. This makes it easier to stay in the chair when the wheels hit a bump. I have found that bumps are common on concrete curb ramps. The ramp doesn't always start at street or parking lot level. Instead, it might start an inch or so above. I can't tell you how many times, in my old wheelchair, the wheels would hit the curb ramp and I would almost go flying out of my seat! The "dump" helps to prevent this. Unfortunately, the two inch dump was uncomfortable for me and caused pain. My wheelchair has since been adjusted to have only a one inch dump. This is more comfortable for me, and it still helps to keep me in the wheelchair if I hit a bump.

My original TiLite wheelchair had a lower back than what I have now. The back pictured above wasn't tall enough for me. It hit below my shoulder blades, and it didn't provide enough support. My body grows tired quickly, and I needed a taller back rest to lean against. 

My wheelchair back used to sit straight up. The chair was set to the specifications that most users like, but the angle was not good for me. I need to have a back rest that leans back a little. I do not have the strength or energy necessary to sit straight up for more than about 10 minutes. My wheelchair back now angles back so that I can lean against it easily.

The wheelchair above is pictured with a standard foam cushion. That was the only type of cushion that my insurance would cover, so I gave it a try. It was comfortable for a short time, but not for very long. Because of an injury to my tailbone 11 years ago, I need a much higher quality cushion.

This is my TiLite wheelchair as I use it today. It has a one inch dump, a higher back rest, and a Low Profile Roho cushion. The back angle also leans back more than it did originally.

Here are the things that I especially like about my new wheelchair:

• A Roho cushion
• Rigid frame
• Pneumatic tires
• Side guards that are separate from the armrests
• Footrests that tuck in
• Adjustable tension backrest 
• The color: Electric Plum
• The light up wheels!

A Roho Cushion

The Roho cushion is the only cushion I have found that keeps my tailbone from hurting because of sitting. It is expensive, but well worth the purchase if you need it. I have been using Low Profile Roho cushions for 8 years now.

Rigid Frame
The frame for my wheelchair is rigid, not folding. This makes for a more stable seat and a more comfortable ride.

Pneumatic Tires
Having air in the tires, instead of an airless insert, also makes for a more comfortable ride.

Side guards that are separate from the armrests
This is especially handy when I want to sit at a table. Armrests usually bump into the table and prevent the person in the wheelchair from scooting all the way up to the table. When the armrests and side guards are one piece, I either have to sit farther back from the table or go without both armrests and side guards. If it is rainy, snowy, or muddy, side guards are a must! I like the option of having one without the other.

Footrests that tuck in
This is a less common option in rigid wheelchairs, but I really like footrests that are removable and/or able to tuck in. This makes it easier for me to get in and out of the wheelchair. It also makes it easier to sit at a table. Tucking the footrests in allows me to scoot all the way up to the table without the footrests bumping into table legs.

Here is a side view of the footrests while they are tucked in.

Adjustable tension backrest

One of my favorite features of this wheelchair is this special back rest. There are three large straps at the top, and one large strap near the bottom of the back rest. I tighten the lower strap, and this gives much needed lumbar support. I keep the tops straps a bit looser.

This is the back rest after the cover has been placed over the tension straps.

I like the purple color of my wheelchair, but my very favorite thing is the light up wheels. They are such a fun feature! I regularly receive compliments about the light up wheels. As I had hoped, they have been an ice breaker, and they seem to make me and my wheelchair more approachable. They also make it totally fun for my children!

Before choosing this wheelchair I did a lot of research. Even after all of my research, there were still a few things I hadn't expected. Here are the things I wish I had known before purchasing this chair:

Pneumatic tires have to be pumped up every 2-4 weeks. My husband fills them up for me, so it isn't any extra work for me, but it is for him. Even with the maintenance needed for pneumatic tires, I would choose them again. The comfort of the ride is worth it, and Will doesn't mind taking care of it for me. However, if you live alone and would need to fill the wheels up yourself, it might not be worth it.

The tubular armrests are connected to the backrest, not to the seat of the wheelchair. This means that when the angle of my backrest is adjusted to recline slightly, the armrests angle upward. This not only looks funny, but it isn't particularly comfortable. Currently my wheelchair back isn't reclined very much, so the upward angle of the armrests is only slight. However, due to my health declining this year, I have had greater difficulty sitting up in my wheelchair. I need to have the back angle adjusted so that it leans back a little more. This will cause the armrests to angle upward even more.

The other problem with these armrests comes when I lean on them to adjust my position in my wheelchair. Because they are connected to the backrest, the backrest tilts forward about 1/2 an inch when I lean on them heavily to adjust my position.

I currently have swing away tubular armrests and separate side guards. Although I do like having side guards and arm rests as separate pieces, if I had it to do over, I would choose to have the side guard and armrests as one piece that connects to the seat frame of the wheelchair.

The handle grips have not stayed on securely. I was quite surprised to have this difficulty. This is my third wheelchair, and I have never had a problem with handle grips coming off on my previous two wheelchairs. On most days the loose handle grips are just annoying and only shift a little bit. However, if I am going down a hill, this small problem quickly becomes very dangerous. When being "pushed" down a hill, the person in the wheelchair isn't actually being pushed. Instead, the person standing behind the wheelchair is holding onto the handle grips to slow the wheelchair down and keep it from rolling too quickly down the hill.

Last fall we went to the zoo in Omaha, Nebraska over fall break. There is a long hill at the zoo that I rode down in my wheelchair. Will held on to the handles to keep me from zooming down and crashing. By the time we were back on flat ground, one handle grip had come halfway off, and the other handle grip had come nearly all the way off. It was then that we realized that these handle grips aren't securely fastened to the wheelchair. If they had come off while we were still on the hill, the wheelchair would have gotten away from Will and I would have had a bad crash on the asphalt, grass, and rocks at the bottom of the hill. Yikes.

The wheelchair handle grips are not something that is covered by warranty, unfortunately. A TiLite representative sent a bottle of contact cement to me to use to re-glue the handle grips to my wheelchair. In the future I will be extremely careful when being pushed down hills.

Overall I have been very pleased with this new TiLite wheelchair. It is high quality and comfortable. It is style, comfort, fun, and function all in one great wheelchair.

Many of you probably aren't interested in all of these wheelchair details, but I hope this is helpful to those of you who are considering purchasing a wheelchair. If you have any questions, please feel free to ask away in the comments or send me an email at RachelLundy@cranberryteatime.com.

Kissing the Wave

"I have learned to kiss the wave that throws me against the Rock of Ages." Charles Haddon Spurgeon

Two months ago I shared a little about the challenges I faced with my health this winter. We made some changes to our schedule so that I could spend a week resting, hoping to avoid a crash like I had in the fall of 2010. While we did manage to avoid a bad crash, we did not avoid a crash altogether. And I’m not sure if it is even possible to avoid a crash.

There is so much that is unknown about my dysautonomia. For 15 years now my health has gotten progressively worse, despite treatment. Treatment does help, but only to a certain extent, and nothing has stopped the progression so far. Right now we are tweaking medications, and adjusting my activity level, with the goal of giving me the best possible quality of life we can at this point.

My energy levels have plummeted in the last two months. I tire out much more quickly than I used to. At my best, I feel like I did a few months ago, but my energy doesn’t last nearly as long. I quickly go from feeling like my “normal” self to feeling completely exhausted. My energy levels are like an old battery that discharges way too quickly. The battery is full, but then suddenly it is empty, and there is nothing left.

In time I will adjust to this new level of limitations and get used to it, but for right now it is really hard. It hurts. And it doesn’t just hurt me; it hurts my whole family. It hurts Will to see me suffering and losing strength. It hurts my children. I can see the sadness in William’s eyes when he comes in to tell me goodnight after I’ve had a bad day. I see Adelaide hurting and missing her mommy. Sometimes she cries and can’t even go to sleep unless I am lying down right next to her, holding her hand. She says she is worried about me and she misses me.

Life is hard, but we were never promised an easy or pain-free life. “Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed” (1 Peter 4:12-13). 

Today, in the midst of grief, I count my blessings and I thank the Lord for Jesus Christ, who gives me reason to have hope. I am also learning to thank the Lord for the trials of life because He uses them for my good. Physical suffering drives me to Jesus. Dysautonomia is the wave that throws me against the Rock of Ages.

Photo Credit: Grant Rambojun

The Purple Bullet

A little over 8 years ago I bought my first wheelchair. I felt such relief when it arrived because the wheelchair gave me more freedom. It enabled me to go on shopping trips and go to church more easily. It helped to get me out of the house. 

Six years ago I bought my second wheelchair. I didn't feel relief when it arrived; I felt disappointment. I was sad that I needed another wheelchair. I hadn't gotten better like I thought I would. I was only getting worse.

Now I'm on my third wheelchair. It arrived this winter, and I am so excited about this new wheelchair! I've gotten (mostly) used to the idea of being sick for a long time, so I'm totally having fun with my wheelchair this time around! I chose a purple wheelchair with light up wheels. I'm probably the only 32 year old in Minnesota with light up wheels, but who cares? I'm having fun!

Because I have help from insurance and a medical supply store this time, I was able to get a very good wheelchair.  It is sturdy, has nice wheels, and it rolls oh-so-smoothly!  It's an ultralightweight, which makes it easier for me to roll on my own.  I still need to do some wheelchair adjustments to get it to fit me just right, but overall I'm pleased with the chair. 

Will has named my chair The Purple Bullet because it can roll so quickly.

My color choice was Electric Plum.

My favorite part?  The light up wheels!

I chose light up wheels mostly for fun. After 8 years, I'm ready to have fun with my wheelchair.  No more black wheelchair blending into the background.  It needs to have a little pizzazz!

There is also a purpose for the light up wheels that goes beyond just fun. My hope is that the light up wheels will make me and my wheelchair more approachable. Wheelchairs can be awkward and make people feel uncomfortable. It can be hard to get to know people from in a wheelchair, but light up wheels might be an ice breaker. Hopefully others will notice them and realize that I don't take myself too seriously.

My insurance company doesn't actually cover light up wheels, but the kind people at Sanford Home Medical gave them to me for free. They've been great like that. :)

See the light up wheels in action!

A Special Friend, A Special Gift

One of the first friends I made after moving to Minnesota was a sweet, godly lady named Arlene. She understood me well because she had a chronic illness, too, only she was more sick than I am. She was a godly example to me of what it means to suffer well. She lived Romans 12:12, "Be joyful in hope, patient in affliction, faithful in prayer" (NIV 1984).

Arlene was a prayer warrior. She had hundreds of cards with specific names and prayer requests on them. A few years ago she heard about a friend of mine who was sick, and when we moved here this spring we found out that Arlene was still praying for my friend! Her faithfullness in prayer has been a great challenge and encouragement to me.

 

Arlene was homebound, and since I am mostly homebound we didn't get to visit with each other very often. Will would go to visit her when I couldn't, and I would hear about how she was doing and what she was praying about.

 

One specific request that was on Arlene's heart was a lift chair for me. She knew that I was having trouble with my muscles. There were days that I really struggled to get around our small house, sit down, and stand back up. She prayed faithfully that the Lord would provide a lift chair for me.

 

Last month Arlene went home to be with the Lord. I really miss her, but I am so happy for her! She is no longer suffering terribly as she was here on earth. She is with Jesus, right where she wants to be.

 

 

 

Arlene no longer needs her lift chair, and her husband, Gary, generously gave it to me. "It's what Arlene would have wanted," he said. What a blessing this chair has been to me! This particular lift chair doesn't just lift me up when my muscles need some extra help; it also reclines all the way. I can lay down completely flat or even have my feet slightly elevated above my head if necessary!

 

Adelaide calls it my "elevator."

 

As I sit in my new chair, I remember the godly woman who used it before me.  I am reminded of her faithfulness, her love for the Lord, and her love for people.  I am challenged to be "joyful in hope, patient in affliction, and faithful in prayer" just like Arlene.

A Hope that Is Sure

New Normal has been hard to get used to. It was months before I even wrote on my blog about New Normal because I kept hoping that my health would still improve some, but it never did. Then a few weeks after I wrote New Normal I actually had a good week! I had more good days in a row than I had had in a long time. For a week I didn’t feel like I was constantly on my last drop of energy or finishing up the last lap in a long race. Resting in bed was comfortable again.  My muscles didn’t burn and ache when I used them. My legs felt like they could hold me up.

I enjoyed the good week playing with my children, spending time with my husband, visiting with others, and feeling better than I had in months. I hoped that I was improving again. I hoped that New Normal would change. I hoped that I could begin to do more on a regular basis. I hoped that some minor tweaks in medications and supplements would help me to continue to see those improvements. I hoped that God was giving me a little more energy again.

However, the changes haven’t been permanent. They were only some good days, now followed again by what is indeed New Normal. It is easier to have bad days when all days are bad days, but when I get a taste of a little bit of energy again? That’s when the bad days and normal days become much harder to take.

On good days it is easy to hope for more. It is easy to hope that I will always have that much energy, but then the normal days and bad days come again. My energy leaves me. I eat healthy food, but my muscles still feel like they have no energy. I get adequate sleep, but still feel sleepy all day long. I have to lie in bed, and I miss my family. The hope of better days is taken away.

But my true hope has not been taken away, and it never can be.

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: 

      “For your sake we face death all day long;   

      we are considered as sheep to be slaughtered.” 

No, in all these things we are more than conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord (Romans 8:35-39, NIV).

My hope is sure. “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal (2 Corinthians 4:16-18, NIV).

What earthly hopes do you have that have been taken away? I encourage you to fix your eyes on Jesus. Believe in Him as your Savior and follow Him. Jesus offers hope that can never be taken away.

Photo Credit: K.Hurley

New Normal

The Doctor and His Patient by Jan Steen

I have been showing an unbalanced view lately on my blog. I have shown the highlights and happy times from the past few months, and that is about all. Reality is, I’m exhausted and it took a lot out of me to paint Adelaide’s kitchen, travel to Louisville, go to Will’s graduation, and have a party for William. Life has been fun, but it has also been very hard.

Despite all of the fun and happy posts, most of you knew that you were only seeing half of the picture. I love that I can’t fool you all!  Some of you have made comments to me about how much those things must have cost me physically. One friend told me that her reaction to the Lego party post was, “She must've been dead to the world after making that cake & having a party." Haha!  Yep, pretty much. I was so tired after the party that I fell asleep before midnight, something I’m rarely able to do. I slept for 12 hours, and in the morning I still had huge bags under my eyes. I looked so bad that I actually laughed. I should have taken a picture; it would have been perfect for this post!

Here is what has been going on physically the last few months. This is the other half of the picture that I haven’t been showing:

“I’m tired. I’m so tired.” I have been saying that to Will a lot for the past three months. I had hoped to improve more from my crash in the fall of 2010, but improvements stopped coming as of sometime in September. Currently I’m functioning at about half of where I was in the spring of 2010, meaning that I can physically do about half of what I used to do each day. What used to be a good day is now just a memory.  What used to be an average day is now a good day. And bad days happen more frequently than they did 2 years ago. In short, I’m tired. Very tired.

I used to be a year-round competitive swimmer, and I remember what hard training felt like. I remember the physical strength and mental determination that it took to compete in a long race. Daily life is kind of like that now. I know that probably sounds like a stretch, but that’s the only thing I can think to compare it to. The simple task of heating up leftovers for the children for supper leaves my body crying out for rest. Physically it feels worse than exercise used to feel, and it takes just as much mental determination. My muscles are constantly telling me “We can’t do this!” and my brain is telling them, “You have to!” In everything I do now, my muscles are crying out for rest.  But even after I rest, my body never feels truly rested.

I used to be somewhat comfortable when I was in bed resting. It was easy to lie in bed. As strange as it sounds, it’s not really easy to lie in bed anymore. My body is uncomfortable. My muscles are uncomfortable, even when resting. I can feel the lack of energy in my muscles, constantly reminding me that my body is slowly growing weaker.

I have had to adjust to some new symptoms this fall. I have involuntary muscle contractions now that happen while I am resting. Sometimes they have been bad enough that my whole body shakes, leaving me exhausted. Mostly, however, they are small movements that are just annoying.

I had quite a few bad flares with gastroparesis this fall. I was throwing up a lot, which would leave me weak, tired, and dehydrated. The bad flares of gastroparesis have subsided now. I was hoping that would allow for more overall improvement in energy levels, but that hasn’t happened.

It has been hard to get used to “new normal” as we call it. I had mostly gotten used to my “old normal” of not being able to cook and clean and do the shopping. Now I have had to learn to adjust again, accept the energy levels I have been given, and serve the Lord where He has placed me. This is the life God has called me to, and He has a plan and a purpose even when I don’t understand.  I praise the Lord for sustaining me during these challenging days, and I pray that somehow He will be glorified through my life lived in weakness.

30 Things

Lisa Copen created a list called, "30 Things About My Invisible Illness You May Not Know." She and her bloggy friends are filling it out and posting it on their blogs and facebook pages as a way to raise awareness of invisible illnesses.  My list is below.  You can go here to find others who have written about their 30 Things.

1. The illness I live with is: Dysautonomia. My doctors believe that it is caused by a Mitochondrial Disease.

2. I was diagnosed with it in the year: 1995.

3. But I had symptoms since: 1992 or earlier.

4. The biggest adjustment I’ve had to make is: giving up a lot of my independence.

5. Most people assume: People who haven't known me for long assume that I should get better someday. I just need the right doctor, the right medicine, the right supplement, or more prayer.

6. The hardest part about morning is: staying asleep. I currently need 11-12 hours of sleep, but the sun doesn’t stay down that long, and the world doesn’t stay quiet for that long.

7. My favorite medical TV show is: I do not usually like medical TV shows.
8. A gadget I couldn’t live without is: my laptop. Using my laptop in bed allows me to keep in touch with the outside world via facebook, twitter, blogging, and email. Without my laptop and internet access I would be very isolated.

9. The hardest part about night is: being tired and exhausted and not able to just lie down and fall asleep.

10. Each day I take 5 different medications, 1 multi-vitamin, and 9 supplements.

11. Regarding alternative treatments I: have found that many of them are either scams or they work for only a very few people. There aren’t magic pills or treatments that cure all chronic conditions. There are some vitamins, supplements, and other natural treatments for dysautonomia, but good doctors already know about these and they advise their patients to try them.

12. If I had to choose between an invisible illness or visible I would choose: invisible. If I have to feel awful, at least I can look good.

13. Regarding working and career: I don’t feel like I am missing out on a career. I like being a stay at home wife and mom. I just wish I had the strength and energy to do all the wife and mom stuff I’d like to do.

14. People would be surprised to know: that I walk around my apartment. I use a wheelchair when I go out because I can’t walk very far or stand for still for more than a minute or two. If I am in my wheelchair I am free to wait in a line or stop and talk to people on my way in to church.

15. The hardest thing to accept about my new reality has been: being isolated from friends.

16. Something I never thought I could do with my illness that I did was: get married and have children.

17. The commercials about my illness: do not exist. Dysautonomia isn't all that rare, but it is not well known.

18. Something I really miss doing since I was diagnosed is: ice skating.

19. It was really hard to have to give up: my dream of having 6 or more children in my arms.

20. A new hobby I have taken up since my diagnosis is: blogging.

21. If I could have one day of feeling normal again I would: go to the beach with my family.

22. My illness has taught me: that all human life is so precious and that suffering has purpose and value.

23. Want to know a secret? One thing people say that gets under my skin is: “if you had enough faith then you wouldn’t be sick.”

24. But I love it when people: ask if they can take me out somewhere for fun or come to visit me.

25. My favorite motto, scripture, quote that gets me through tough times is: “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all" (2 Corinthians 4:17-18, NIV).

26. When someone is diagnosed I’d like to tell them: “I’m so sorry that you have to walk this road. It is worth it, but it hurts. I will be praying for you.”

27. Something that has surprised me about living with an illness is: how easy it is on some days and how incredibly hard it is on other days.

28. The nicest thing someone did for me when I wasn’t feeling well was: come to my home and bring a tea party to me in bed.

29. I’m involved with Invisible Illness Week because: I think it is important to spread awareness for dysautonomia and other invisible illnesses, and because it is fun to work together on this with others who suffer from invisible illnesses.

30. The fact that you read this list makes me feel: thankful.

Mito and Moving

Health update:

An update is long overdue!  It is hard for me to keep up with the big updates I have been doing on my website, and so they keep getting pushed off.  The longer I have to push it off, the bigger the update gets.  Then it gets harder and more impossible to do.  It's a vicious cycle!  As a way to make things easier, I have started a blog.  I hope to be able to do small updates frequently.  The blog also has a much easier editing program, making updates simpler and more time efficient.

Now, onto my actual health update.  The tests from Dr. Cohen so far have not shown anything

diagnostic.  This is neither good news or bad news.  It is just no news.  The problem with mitochondrial disease is that there aren't any tests to rule them out.  It is very possible that I have one, but the tests have been inconclusive.  There are still more DNA tests to be done, but the preliminary test results don't give clear enough direction for where to procede next.  Dr. Cohen said that he would be happy to evaluate me again in the future, but for now we've hit a road block.  If/as my symptoms continue to get worse, I will go see Dr. Cohen again.  Perhaps new symptoms or new severity in my symptoms will give him a better idea of which DNA tests to run next.

I have had a lot of troble in the past few months with brain fog.  I am usually a little "foggy," but lately it has been worse (adding to the difficulty of website updates!).  On some days the brain fog has been very bad.  It has gone beyond just brain fog into more severe cognitive difficulties.  On one weekend in particular I was very confused.  Our apartment no longer looked familiar to me.  I forgot to eat and drink, and Will had to remind me regularly to do so.  I could not carry on a conversation.  At one point I forgot who my son was when I saw him.  That was very scary.  Thankfully, Will was here to help me through the difficult weekend.  We also have wonderful neighbors who have volunteered to be on call whenever I need help.  I have had difficult days since then, but I am now able to recognize the warning signs and rest before the cognitive difficulties become too severe.  My doctors have wondered if I'm having some seizure activity in my brain during these times.  The general consensus, though, is that my brain just isn't getting enough blood flow despite medication and compression hose.  The best treatment is just to go to bed and keep my feet elevated. 

I'm in the process of doing a new med trial, which has been difficult.  I often get the side effects without the benefits.  The jury is still out on whether or not the med is helping.  Meanwhile, I'm just hangning in there as best I can.  My mom is here to help out while I work through problems with my meds. 

 

Regular Life Update:

We have moved!  We are now living in Kentucky so that my husband can attend Seminary.  Moving was very hard on me physically, but with a lot of help from my family I am managing.  We have been in Kentucky for almost 6 months now.  There is still some unpacking to do, but we are mostly settled in to our new apartment. 

William really likes his new big bedroom with his little bed and all of his toys.  Will is doing very well in seminary and is enjoying his classes.  I like living in a small apartment.  It is much easier for me to get around.  We have some wonderful neighbors and have quickly made friends with them.  We are so thankful for the opportunity to be here.  God has been providing for our needs, and it has been amazing to watch Him open all of the right doors, and provide a way for Will to go to seminary.

  

I'm tired and won't be checking this for grammar and punctuation mistakes.  I've been working lately on simplifying and being efficient.  I can't be a perfectionist like I used to be.  It's just not physically possible anymore.  So this might not be the perfect update, but at least it is complete!  There is now one more thing I can check off my to do list.  Ahhh....

Edited in 2009 to add:

This post and all posts from 2007 and 2008 are from update pages on my old Cranberry Tea Time website. Now that I have merged my blog and website into one, I am am moving the old updates over here.