Celebrate Life's Little Victories

Today we celebrated! Today marked the first week since Christmas that Miss B was able to go to school Monday through Friday. As soon as we got home we all (Miss B, Percy and I) sat down together and had some chocolate chip ice cream with Magic Shell topping to celebrate. Even Miss B agreed that she thought the new medicine was helping. As the mama, I can’t tell you how happy and relieved that made me feel. 

The last day or two I’ve begun to hope that maybe Miss B’s life can return to some of what it was a few months ago. But even now I am cautiously optimistic. As we were chowing down on our ice cream I asked Miss B about her pain level today and this past week. (The last few days she took only one pain pill a day and today she didn’t take any). I thought her response was interesting. She said, “That it really hasn’t been to bad, I think the medicine might be working.” I started to laugh when a couple of minutes later she said “My head really hurt today and oh, how my feet were killing me.”  When I asked her about the contradiction of the two statements, she kind laughed a little and said she didn’t realize I was asking about overall pain. She said although it was bad today, it wasn’t as bad as it has been.  The conversation only reaffirmed for me that we are definitely living in the land of a new normal.

In the world of doctor’s appointments, we are still in a holding pattern. I called our doctor’s office today about the referrals to the specialists. They did find a neurologist and are waiting for a callback for an appointment. They’re hoping the neurologist will be able to point us to a rheumatologist. Hopefully we’ll hear something back next week.

All in all its been a good week, and I’m looking forward to a nice weekend spending time  with my girls.  1 Thessalonians 5:16-18 says, “Rejoice always; pray without ceasing; in everything give thanks; for this is God’s will for you in Christ Jesus.” I have spent a lot of time in the last months praying and petitioning. Now is time for rejoicing and giving thanks even in the little victories as we continue to hold on to hope.

A Step in the Right Direction

I think we took a step forward today. We went to see our family doctor and discuss the specialist’s findings. His office is going to see if they can hunt for a Pediatric Neurologist and Rheumatologist,  and hopefully find one closer to home with less of a wait time for an appointment. They’re suppose to call me back tomorrow and let me know what they find out. So on this issue I’m waiting with prayerful hope.

In the mean time he was willing to prescribe medication to begin treating the fibromyalgia. It feels a little odd being so happy to have a doctor prescribe medicine for my child. It’s contrary to how things should be, but also a part of the new reality we’re living in. He prescribed one of the new fibromyalgia drugs they’ve been advertising on TV. He wants Miss B to try it for two weeks and see if it provides any relief. I am praying that the medicine is effective, and we can see measurable results quickly.

The specialist last week also told us that many children with JPFS also have ADD, and if the ADD is treated, it can possibly provide relief for some of the JPFS symptoms. The doctor today also agreed to have Miss B evaluated to see whether or not she has ADD. School has been tough this year for Miss B. Not only the physical exertion and fatigue, but it has also affected her academics.

When adults talk about fibromyalgia they often refer to the muscle pain or the fatigue. Another symptom that is not discussed as often is something that is referred to by most fibromyalgia patients as “fibro fog.” It is described as having difficulty concentrating or sometimes described as your thoughts being “fuzzy.” As an adult it can be annoying, but something you cope with. For example, there was a week when I couldn’t remember my own phone number. I knew I should know it, but didn’t. I knew I could open my checkbook and locate it, but I shouldn’t have to. It seems like a silly little thing, however it was frustrating that I couldn’t clearly recall it in my mind. 

Now imagine being a student in class. You are already battling fatigue and are in pain because you have to sit still for 45 to 60 minutes at a time. The longer you sit, the stiffer you become, the more your muscles ache, not to mention the migraine headache which is exacerbated by the florescent lights. Then on top of that you are struggling to keep your thoughts focused on the words coming from your teacher’s mouth, but it’s hard. Your mind’s filing system just went on the fritz and your teacher’s looking at you expectantly for the answer to the question she just asked. You can’t retrieve the information she wants even though you know you should know the answer. That is want fibro fog can look like for a child. It’s unseen and unexplainable to a teacher because the child doesn’t understand it themselves.

When I left the doctors office today I felt hopeful. Hopeful that Miss B is going to get the help and relief she needs. Hopeful that the new medicine will be effective.

I know Miss B doesn’t understand it all. She hates going to all the doctors. She just wants her life back, her healthy life. When I told her we had an appointment today, she let out a frustrated growl. She said, “Can’t I go a week and a half without having to go to a doctor?” When I pointed out that it had been a week and half, she said then how about two and half weeks. After going to so many appointments and not finding any relief, I think she has lost faith in doctors (not that she’s ever really liked doctors in the first place). I think she thinks their main goal in life is just to shuffle you around from one doctor to the next saying they’ll help but it never actually happening. I keep telling her (hoping and wanting to believe its true) that this appointment will be different; today they’re going to take action. Well, today was different and today my hope is stronger than it was a day ago.

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A New Normal

We all have hopes and dreams for the future, particularly for our kids. We long to see them happy, healthy, and ready to conquer the world. As a parent I have endeavored to guide my children and give them the tools they need to face life head on.

I have two remarkable daughters. My girls came to live with me at the ages of 11 and 8, and I was given the amazing privilege of adopting them. For their own privacy I have chosen to give them pseudonyms for my blog posts. My oldest is now 17 and she is Percy because she has an amazing spirit of perseverance. My youngest is 13 and she is Miss B because she is one of the bravest people I know.

Right now we are facing an unexpected battle. Just recently Miss B was diagnosed with Juvenile Primary Fibromyalgia Syndrome (JPFS). I, myself, have lived with both Lupus and Fibromyalgia for the last 12 years, however I didn't even know children could have fibromyalgia until a month ago. It is one thing to deal with chronic pain as an adult, its a whole different game when it's your child who is suffering.

In the last few weeks I have spent a lot of time scouring the internet and books looking for information about JPFS. There are plenty of sites about the symptoms and diagnosis, but very little about day to day living. I need to know how to help my child cope with unrelenting pain. I need advice from other parents on when to push and when to step back. I thought I knew what pain was living with chronic conditions myself, but I have quickly come to realize that what my daughter is facing is much more severe than anything I've dealt with.

There hasn't been a day since the beginning of January when Miss B hasn't lived in pain. It has become her ever constant companion. She loves basketball but had to quit the team. Sitting in class or crossing the school campus have become difficult chores. When school is over she frequently comes home and goes straight to bed. Along with pain that starts in her back and radiates out to her limbs, she also has an ever present migraine level headache. Too much light or sound stimulation can cause episodes of dizziness and vomiting. Mornings are difficult, some days she wakes up crying because the pain is so intense. She has not been able to go to school 5 days in a row since January. (A year ago she had perfect attendance and the year before that she missed only one day of school). Her senses of sight, sound, smell, and touch seem to be on a 24/7 overload. We have had to buy darkening curtains for both our living room and her bedroom. She spends lots of time alone in her bedroom because she needs a quiet dark place. It kills me as a mom because I'm unable to provide any comfort. The lightest pat on the back or rub on the arm evokes a sharp, painful reaction. I just have to say, when hugs hurt, something is just plain wrong.

In January we started the long procession of doctor's visits. We started with our primary care doctor who initially thought the pain was a result of Miss B not liking school. I was quite mad when I left the doctor's office that day. Although I'd be the first to tell you that Miss B doesn't exactly love school, I can also tell you I know my daughter. What we're dealing with is independent of Miss B's lack of enthusiasm for school. We then had a couple of visits with an orthopedist. He was the first to suggest the JPFS, and he referred us to a chronic pain specialist. Last week we finally had our appointment with the chronic pain doctor. He confirmed the diagnosis of JPFS and agreed that her case was severe. The bad news was that he is retiring, and he would be unable to treat her. Because of his impending retirement he wouldn't even prescribe medicine because he would be unable to monitor the effects. 

So now we have a diagnosis, but we still, after three months, have no treatment. I know from my own experience that once pain is allowed to get out of control it is very hard to reign it back in. I fear for Miss B that even once we find another doctor and start a treatment plan it will still be some time before the pain can be tamed.

That brings us to the real problem of the moment. Here we are three almost four months after I realized we had a serious problem and there is still no treatment for Miss B. Do you know how frustrating that is? I spent several hours on the phone this past week trying to locate a pediatric rheumatologist that would treat JPFS and take Miss B's insurance. (She also needs a neurologist for the migraines). After many, many phone calls I found one. You read that right, one. He's in a neighboring state and we will have to apply through a Shriner's Hospital to get an appointment maybe in June. That would be three more months with no treatment plan. In the middle of the phone calls I just stopped and cried for a few moments. I never knew getting my child the help she needed would be so hard.

I don't think I have felt more alone in my life than I have the last couple of weeks. I feel like the lone warrior standing on the battle field trying to project my child. Her protector, her advocate, her cheerleader. I love Miss B with all my heart. I tell her that she and her sister are the very breathes I breathe. These last few days I have felt so helpless, so inadequate. I can't relieve her pain and I can't get her the help she so desperately needs.

In January my pastor was talking to me about crisis. He said after a crisis comes a new normal. You take what's happened and you weave the experience into your life. Things won't be the same, but you will find a "New Normal." Lately I have felt like each day is a new normal for our family. We are trying to adjust. Priorities have changed. Routines have changed. Life has changed. 

One thing I don't want to lose sight of as we walk this journey is HOPE. I chose the title Hope Matters for this blog because, well, it does matter. My goal for myself and for our family is to remember to love, to laugh, and to hope. My mother has always quoted Jeremiah 29:11 to me. For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Now I hold on to the same promise for my own daughter.