How I Developed Chronic Pain

In order to really share my story with you, I need to go back to 2003. That’s when things really changed in our lives. My husband and I were happily married, I was pregnant with our fifth child and while we struggled financially, we were happy and grateful for our blessings.

In April of that year, I gave birth to a tiny, yet healthy baby girl, but I was not well. I had been feeling like something was wrong since February, but the doctors had ignored my concerns and even after I gave birth, they sent me home the next day with a fever and an inability to move my right leg (even though I hadn’t had anesthesia). Over the next few days, I returned to the ER several times, only to be sent away with antibiotics, instructions to rest, pain meds, etc. Nothing was helping and I felt like I was dying. I was in excruciating pain and I had fevers fluctuating up to 105 degrees. Finally, a week after Hannah was born and much persistence on my part that something was wrong, I was diagnosed with two blood clots – on my ovarian vein and renal vein.

Once I was admitted to the hospital, things only got worse after the doctors administered Heparin, which it turns out I’m allergic to. By the time they stopped the Heparin, I actually had clots in my femoral veins, iliac veins, ovarian vein, renal vein, and my inferior vena cava, among others. It was devastating. At that point I couldn’t walk and my doctor actually told my husband and me to call our family and friends from out of town because he did not expect me to make it more than a couple more days. They could not get the clotting to stop and blood has to flow in order for a person to live. As a last resort, he also suggested that they transfer me to a hospital in another state where a specialist might save my life.

We spent the next few weeks fighting for my life. The specialist managed to keep me alive. He treated the hyperactive clotting as a blood cancer and with a blood chemotherapy he was able to get the clotting to go into “remission,” for lack of a better description.

My life had been spared, but that didn’t mean it was going to be easy. When I finally came home from the hospital, I had a 7-yr-old, 5-yr-old, 3-yr-old, 2-yr-old and newborn to care for, but I could no longer walk, I was literally in constant pain and I had begun to suffer from migraines due to the blood thinner they had me on at the time.

It took me over 18 months to learn to walk again. At first I used a wheelchair and then a walker. I tried as much as possible to walk on my own, but it was incredibly painful. I was trying to force blood to flow in areas that had been blocked off for so long.

Not only was this process horrendously painful, but it was also emotionally draining. My life had been forever changed. I had a family to care for, but oftentimes they were caring more for me than I for them. Over the next ten years, I just focused on trying to regain my health and help my blood flow well.

2014 – This is a photo of where I have had clots. Most of the ones below my waist have calcified so they are actually still there. I grew collateral veins to create blood flow so that’s the only reason I’m alive and walking.

All the red veins have been clotted. Most of the ones below my waist still have calcified clots in them, but fortunately I grew collateral veins so that’s how I received blood flow when I was trying to learn to walk again. I actually have 3 inferior vena cavas because the one I was born with clotted completely when Hannah was born. The second clotted a few years ago. When I’m in a lot of pain or frustrated about my weight, etc., I try to remember that I am fortunate just to be alive.

2018 Update:

I wrote this post several years ago for the sake of being able to share the story with people without having to actually write it repeatedly. It’s still difficult for me emotionally to talk about it because I do live with daily reminders of how this has impacted my life. With that said, these days I have much to be grateful for! I am walking well. I exercise regularly, eat well and enjoy life. I love my husband and children and we’re blessed to know what a treasure it is to be in one another’s presence. I try to focus on these things rather than the pain or the loss.

I hope my story has been of some encouragement to you.


Renewing Your Marriage

Our children accuse me and my husband of being inappropriate. They roll their eyes, make gagging noises and, if we’re really successful in grossing them out, they leave the room. (Usually that’s our goal! Whether we want to talk, watch a movie, trade back rubs, do a devotional or be intimate, sometimes we just want to be alone.)

Several years ago, our kids regularly left the room for different reasons. Evenings, weekends and holidays were stressful. Chris and I couldn’t be in the same room together without one of us committing a slight against the other or simply getting on the other one’s nerves. My husband’s bed was the couch and if he happened to wander into the bedroom, I’d sleep on the couch. Things weren’t always that way, but we didn’t know how to fix the problems that had led to our dissatisfaction with one another.

These days, Chris and I have an intense desire for each other. If you’ve been looking at your spouse lately and wondering how you simply became roommates who sometimes have sex, don’t despair. Rekindling the romance might not be as difficult as you think, but it will take some effort, particularly when it comes to replacing bad habits with positive habits that encourage growth in the relationship. Try the following suggestions and let me know how they work out for you! (We don’t need details, but you’re welcome to share your joy with a renewed relationship.)

Take your spouse to bed.

After several years of sleeping separately and allowing our relationship to disintegrate emotionally, spiritually and physically, when we finally decided to see if we could repair the damage, one of the first changes we made was to establish a bedtime for our children. Although they had bedtimes when they were very young, this was something we hadn’t enforced in many years. It became our habit to allow them to stay up until 11:00 p.m. or later, usually in the same room with us watching television or hanging out. (As with many homeschoolers, our bedtimes weren’t firmly established. Unfortunately, I see this trend happening in many homeschool households and it is harming marriages.) Anyway, at some point my husband began sleeping on the couch and I sometimes wonder if part of the reason was just to get everyone to go to bed – since he had to get up early to go to work. Of course it didn’t help that the bed wasn’t an inviting place.

In our personal situation, sex was difficult for me for many years following the birth of our last child. I developed serious health issues and one of the side effects was severe pain in my legs and pelvic area (made much worse with intercourse). I desperately wanted to be with my husband, but the pain made it impossible. While that is a valid excuse, the fact is that I chose not only to avoid sexual contact, but also physical contact. If you get nothing else out of this article, I hope you’ll come away with this. Your husband wants to feel loved as much as you do and for men, physical contact is a large part of that. Without going into too much detail, physical contact can result in sexual satisfaction so that true intimacy offered only through the marital relationship can be fully realized. Even if all you do is spend time cuddling, this time alone together is what separates your marriage relationship from every other relationship.

Address any unresolved issues.

When Chris and I first began trying to establish new, healthy habits that would help us renew our relationship, I tried unsuccessfully to “forgive and forget” something that had become one of the biggest wedges in our relationship. Several years earlier, Chris had made a major decision, without my approval, that altered our lives. I realize why he made the decision, but it hurt me beyond comprehension that he would make such a huge decision that affected us both based on discussions with others rather than me. For a long time, I tried to “get over it,” but it was a festering wound that never healed. Finally, I shared my frustration and disappointment with him. While this didn’t resolve the issue, Chris was willing to listen to my point of view and recognize the pain he had caused. A year later – at great cost to us financially – we reversed the decision he had made without my approval and it was another turning point in our marriage. We began to see how God was healing our hearts and our marriage.

If there are unresolved issues in your marriage, you need to address these. Don’t accuse your spouse, but present your grievances with a plan on how to make the situation better. If you bring up an issue, make sure you have an idea on how it could be made better. Be willing to hear his or her side of events as well as your spouse’s ideas for resolution. If things become heated, set a future time to come back together to discuss the situation calmly. Once you’ve addressed the issues and made arrangements (when possible) for resolution, then move on. Don’t keep bringing up the past. If you still feel the need to do so, then you have not truly addressed the issue and certainly it hasn’t been resolved.

Keep your eyes on each other.

As we grow older and fatter, as gray hairs appear and love handles grow larger, it can be tempting to focus on what is “wrong” with our bodies. Even for those who seem to have avoided the physical ravages of age, in our society we tend to seek affirmation regarding our bodies from the time we’re little tots until we’re enjoying our last days. You want people to say you look nice, notice that you had a haircut or ask if you’ve lost weight. Most of us would like to hear those same comments from our spouse and when he (or she) doesn’t meet our expectations, we are tempted to seek praise from other sources (throwing ourselves into our career, devoting all time and energy to our children, accepting the advances of another person, etc.).

One way to keep your eyes on each other is to create a habit of noticing one another. Tell your husband he smells nice, he’s handsome, he works hard, he’s a great dad, etc…. Tell your wife how you admire her, how she’s a great mom, how you like the feel of her hands, her hips, her lips, her… You get the idea!

Above all else, don’t get into situations where you’re tempted to turn your focus elsewhere. Live above reproach so that your spouse trusts you. Let your spouse know that he (or she) is the most important person in your life.

Avoid airing problems on social media.

This is self explanatory, but it will help your marriage if you follow one simple rule regarding your spouse and social media:  Only mention your husband (or wife) on social media if you’re giving him (or her) a compliment or shouting to the world how in love you are. Go back to kindergarten rules in this area. If you can’t say something nice, then don’t say anything at all!!

Make a commitment to renew your marriage.

Finally, do whatever it takes to renew your relationship with your spouse. Regardless of our society’s current disregard for the sanctity of marriage (and of life in general), the institution of marriage is of God. The blessings of marriage are eternal. God created man and woman to be together as one in the marital relationship and this fellowship is unlike any other that exists.

Date your spouse. Look at old photographs. Listen to love songs you enjoyed as a young couple. Watch movies together. Take a walk. Hold hands, for goodness sakes! Sneak a kiss in public. Above all, pray and be patient. Some wounds can take longer than others to heal, but God is the great healer.

Finally, expect great things. Watch for the romance to blossom anew. Prepare to be surprised. You might just discover new ways to clear a room and look forward to those precious moments when you and your spouse can be alone.

The flu has hit … with horrible lower back pain

I left the house around 11:30 on Friday feeling fine.  My husband and I only have lunch about once every two months so we had arranged to eat lunch together, then I was going to pay bills and then work on my new book for a few hours.  During lunch, the tea tasted way too strong so I didn’t drink it and despite my delicious food, I started feeling nauseous so I couldn’t eat.  I had also started developing a headache so we requested a to-go box.  Chris headed back to work and I headed out to pay bills.

Within the hour, I started feeling much worse.  A LOT worse!

I quickly paid a few bills and then came home and went straight to bed.  It was about 3:00.  By the time Chris came home from work at 5:30, I was freezing, every part of my body hurt, I had a horrible headache, and I had developed diarrhea.  We checked my temperature and it was 102.5.  I had gone from feeling fine to feeling like I might die in just a few short hours.  Due to my chronic health condition and lowered immune system, Chris called my doctor and he gave me some Tamiflu – antivirals.  I think I would be much sicker now if I hadn’t had those.

Friday night I spent the whole night freezing to death while Chris tried to comfort me.  My whole body ached and my lower back was absolutely killing me.  He tried to rub it, but every time he touched me it hurt.

Yesterday, last night and all day today I’ve remained miserable so I’ve been in bed most of the day.  Since we’re 99.9% certain that I have the flu (as certain as you can be without the official test), I expected the sudden onset, aches and chills, headache, etc., but I never anticipated the horrible pain in my lower back.  I didn’t know that was associated with influenza so this evening I’ve felt well enough to stay up a little while and I have found a few other bloggers who have said that one of their main symptoms was lower back pain.  Interesting.  Anyway, I just thought anyone else who is experiencing this might want to know that yes, it is possible to have horrible lower back pain with the flu.  Other than the aches and chills, one of my other main symptoms has been absolutely excruciating stomach pain – like little gnomes are in my whole abdomen dancing with little knife-shaped shoes and poking up into the air with little knife-fingered gloves!

Well, my energy is sapped.  I have to rest again.  I hope to feel better in a few days, but meanwhile I’m thankful that at least tonight I don’t think I’m going to die anymore like I did yesterday and even earlier this morning!


Update on health issues

My friend and I traveled to Vanderbilt Medical Center on Monday.  We made frequent stops so that I could walk around because my legs were hurting so much, but the trip went well.  We had to be at the hospital at 7:45 yesterday morning and when we eventually saw the doctor, she spent about ten minutes with me and then said I could leave.  They did some blood tests and said that they would call my doctor here and give permission for me to start the new medication.  I guess my doctor really just had me visit her so that he would have a second opinion that I was a good candidate for this medicine.  It is still relatively new. 

This doctor did agree with the other doctors that I should have a scan of my brain due to the continued pain at the base of my skull, but she couldn’t do the scan there.  The doctors here were planning to do it after I visit a neurologist at the end of March, but I didn’t feel that I could wait that long.  After I came back last night, the pain in my head was so bad that I went to the ER around 10:30 and spent the next several hours there.  The nurse said  perhaps I was just dehydrated, tired, etc. and the doctor said he didn’t think Coumadin caused headaches.  I emphasized again that this is not a headache, but a pain in the back of my head.  I told the doctor I wasn’t leaving until they did SOMETHING so he finally wrote me a prescription for the MRI to be done outpatient.

The scheduling girl had sympathy on me and she was able to work me in tomorrow.  I have the scan at 4:00.  The doctor said I could have a small blood clot or something back there causing the pain.  Hmmm… I have a serious history of clots and might have a blood clot in my brain, but that’s not an emergency.  Needless to say, I am beginning to have much disdain for the medical field.

I spent the whole day in bed again today.   The spot in my head hurt so bad that I just didn’t want to move and on top of that, now I have another spot that is hurting.  These aren’t “headaches,” but actual places that HURT.  If they do not figure something out by Friday (my next appointment), I’ve already decided that I’m just going to stop all the medicine and live with the clots – or the possibility of new ones – and the risks associated with that.  I can no longer handle all the pain, the constant appointments, the bills, the time away from my family because I’m so sick or gone to the doctor, etc.  I just want to take care of my family and write.

I do thank you all for your prayers and support.  I’ve appreciated the encouraging e-mails as they have been a small ray of light through all this.


Continuing to deal with chronic pain

As we feared would happen once I started taking the blood thinners again, I started having some headaches a couple of weeks ago and since last Wednesday, I’ve had a headache that won’t go away. It doesn’t seem to matter how much headache medicine I take. These headaches are a reaction to the blood thinners so nothing works to make them stop except to stop taking the blood thinners, which I can’t really do without a high risk of dying. We were hopeful that this wouldn’t happen this time, but it has. I have to go back to the doctor this week to see if we can find something – perhaps a Beta Blocker – that I might be able to take every day to actually prevent the headaches rather than taking something to try to get rid of them once they’ve already started, since that obviously doesn’t work. Please pray that we’ll find another option. On top of that, all week I’ve been having more severe abdominal and leg pain. I’m starting to feel like a walking time bomb, but I know that the Bible says:

“Because he loves me,” says the LORD, “I will rescue him; I will protect him, for he acknowledges my name.

He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.

With long life will I satisfy him and show him my salvation.”

Psalm 91:14-16

I generally can’t stand complaining (by me or anyone else) so I really try to act like everything is ok, but it is not. I am going to go crazy if I can’t get rid of these headaches. I will NOT let this stop me from living, though, so I’m still writing and working a few hours per week and doing as much as I can with the children. I am happy to answer questions and do the regular work I’ve been doing with homeschooling. If anything, it helps me focus on something else besides the pain for a while so I’m glad to have distraction. Otherwise, I still just have to sleep a lot and that’s good, too, except for the fact that I don’t get much done. : )

If you are dealing with the same sorts of issues, please know that I do understand what you are going through. I talk with homeschool moms all the time who have been inspired by the posts I’ve made on chronic pain and they are encouraged. I think it is helpful to others simply to know that they ARE NOT ALONE in their suffering.

Sometimes, especially with pain – whether physical or emotional – it’s easy to feel like you’re completely isolated from the rest of the world and everyone else goes around acting completely normal while you are suffering so badly. I used to tell Chris, my husband, when I was in severe pain, that I honestly couldn’t understand how people could just be walking around acting like things were normal and life was good. Even though I lived without pain before I got sick and I fully understand that you can’t FEEL someone else’s pain, I got to the point where it was so bad that I just didn’t understand how they couldn’t feel my pain. It’s almost like the pain was so severe that I expected it to flow out of me and others would feel it as well. I know that sounds silly, but when you have pain that is debilitating, it is so all-consuming that it’s all you can think about. I understand this.

If you need a sympathetic ear, e-mail me. It is NOT easy to homeschool when you live with chronic illness, but it CAN be done!

Yours truly,