I joined two support groups. One for fibromyalgia, and the other for multiple sclerosis. I relate more to the people with multiple sclerosis than those with fibromyalgia, although the symptoms and medications seem to be highly related. Maybe fibromyalgia is just an early form of MS.

Sleep has been a huge problem lately. Despite strong medications to help me sleep I seem to be running in ridiculous cycles. I will sleep about 20 hours, and then I'll sleep 2-4 hours for a few days, then back to 20. It is really frustrating. When I sleep during my longer sleep periods, I am impossible to wake up. Damon, Benjamin and alarm clocks have tried. I practically sleep standing up. When I can't sleep, there is nothing that will help me. I hate this cycle. It is especially hard since it is summer and Damon and Benjamin want to do things with me that my weird sleeping issues won't allow. When I don't sleep at night, I end up having to sleep sometime during the day, so either way, I'm missing out. From what I've read, it isn't uncommon for people with chronic illness to have sleep issues. It's one of the top complaints on all of the support groups and blogs I've read. Pain, sleep issues, and medication reactions. What a dream life we all lead.

I applied for disability yesterday. It was hard. I cried a lot, and I'm not even sure why. I think I feel lost. Where am I without work? We need help with them money, and I am certainly disabled by all this, but how do I prove that without a workable diagnosis and such. I've read it is common to be denied the first two times you apply, so it is better to apply early. I also need to get a referral for an MS specialist from my neurologist so I can see one at UCLA. Currently I am only approved to see a doctor who specializes in seizures, and nobody is sure if that is really even happening. It is possible this is all just fibromyalgia, but there are not real treatments for that, and there isn't even a good doctor in town that I can find. I don't know what to do about all that, but I am so tired, sore and sick of all this mess. I want so much more from my life, and can't have it. I cry a lot lately. I want to be happy, and move on, but so much is uncertain, and so much has been lost. What do I do?

Well, now it's time to be off, to digitize medical records, and copy them for the local social security office. I must also organize my records and have them sorted by disease, diagnosis, date, and supporting tests. It may take a while. There are also fun things to do today, and for that I am grateful. Sleep will always come later.


I could not survive my illness without my family, but it has had a toll on their well-being an that makes me sad.

Benjamin is very sad lately. He cries and whines, and he hates that someone has to babysit him. Fortunately summer is coming soon and then he can be home with me and his dad. His dad does crafts, and yells when he gets frustrated. Sometimes it is scary when he yells, but I understand why he needs to. There are so many things to do and to worry about. I want to yell at my sickness, take it out and punch it until it gives in. I want to beat it to a pulp and make it run away and leave me alone, but it won't.

I found a bunch of online support groups. They are helping me come to terms with what will happen. Hopefully by tomorrow I will know if I can schedule my appointment with UCLA. I will have to organize my medical files, and get some from my old PCP, but that's not too big of a deal. It is just hard to know what is important. I think I might even download the disability paperwork and have that all filled out and ready to go with me, or I'll turn it in right before, and then add UCLA's results to the mix. Either way, it will be interesting to learn how that process works.

I have also learned that fibromyalgia is a nasty disease, and have found support groups that deal with that. MS plus fibromyalgia is not a good combination, and I will probably struggle with fatigue forever. It is not uncommon for both groups to be put on stimulants, which concerns me, but if it helps me parent and the like then it may be worth a shot. I have tried them in the past with some success, but worried that they were worsening symptoms, or masking symptoms. I want to put them off until I have a better grasp as to what is wrong with me.

I found fabric to make Benjamin two quilts. One is a Mr. Happy quilt, and the other will be a treasure map quilt. He has tons of blankets, but he loves them, and I want him to have blankets that I gave him that he can pass on to his children. It may be all that they have to know me by.

Sleep continues to evade me. I try to sleep at night, and even take medications that are supposed to knock me out right away, but then I don't. I don't know if I just fight it, or if I'm always tired so I don't know the difference. Maybe I'm just resistant to such things. I am loopy though, and I forget things. Damon left to get celery in the grocery store today. He told me where he was going and everything, and I lost him. I couldn't find him, and didn't know where he was. It was a little scary. I'm afraid that one day I'll lose Benjamin, or my way home. I've forgotten and lost so many other things lately, that I wonder how my mind is ever going to keep up with all that is to come. I'm going to need a system. I think it's time to create a medical control journal like Flylady suggests. I just don't know where to start, or how to organize it.

For fun my family has been playing Mario on the Wii. Benjamin obsesses and got very upset when we failed to wait for him at one point. We had to stop playing, and he cried for a long time. He told me that he misses me when he goes to babysitting, and that he doesn't like it that I'm sick. I told him today that because of my illness it might be harder for us to adopt, and he cried and said that he would have no one to play with. He is worried about first grade and all the changes, and wonders who will be his friend if he doesn't have brothers or sisters. We had to talk about how we have friends at church and school, and that his cousins and such are his friends and will play with him.

The other day Benjamin asked what would happen to him if Damon and I died. He was relieved to find out that Grandma and Grandpa will take care of him, but didn't know how he would get there. We told him if that happened to call 911, and they would get Grandpa and Grandma for him. He was excited that he would get to call 911 to get his grandparents, and relieved that there was a plan. I don't want him to be afraid or worry, but this is a difficult situation. Damon and I worry. Benjamin's life has been drastically changed, and I want him to feel secure. It may be weird to answer questions like that, but how do you teach your child about chronic illness, and the possibilities it may bring without scaring them. We keep it light and silly and only answer what he needs to know, but introduce topics to help him prepare.

Ben told me today that when he gets upset he prays. Today his dad got mad at him, and he hid under some blankets and said a prayer. I asked him if it helped, and he told me it did. I told him that Heavenly Father will always help him when he prays. He prays a lot. He prays that his mommy will feel better. We read a book about faith, hope and charity, and it had a section about Priesthood blessings. Benjamin asked for one, and I told him to ask his Dad because only Dad's have the priesthood. He's had a cough for a while, because of his asthma, and it bothers him. I think we may review that concept tomorrow while Damon is around. A blessing might help calm him and give him the peace that he needs to endure these difficult times with us. I know that I need them, and Damon is always ready and willing. It has been a huge blessing to have that in my home and in my life. The priesthood carries me through my darkest moments, my deepest fears, and my most painful and terrifying days. It doesn't make everything perfect, but it always gives me the answers, encouragement and peace that I need to continue forward.


I found an amazing new neurologist, and she spent hours reviewing my history, and trying to puzzle out my medical issues. She is treating me as best she can, but still thinks that a visit to UCLA will be helpful, so UCLA, here we come. I am scared.

My counselor asked me if I really understood what a diagnosis of MS, or worse could mean. I do. It means painful procedures. Difficult days, long nights, and horrific treatments that can just hold the disease at bay. It will most likely mean that I will hospitalized frequently in years to come. Some mean that I will become paralyzed, or lose my eyesight, or my ability to communicate, or even read and write. Divorce rates are high in couples where one has a chronic illness, which means I could end up alone. I will live a slow painful death.

I have decided that due to the regular recurrence of illness and the fact that I am prone to catch every other bug that comes along, that I can no longer work. I have to find new teachers for my students, and I will probably apply for disability just to help my family financially. It is all a sad and difficult prospect. I love teaching, and without work or school, I am home, alone. Damon and Benjamin will go on with life. They will work and go to school, hike, camp, run and play. I can't. It is hard to tell my son that I can't do the things he wants to do. I love him, and we talk. He wants me to play with him, but it is hard for me to keep up with my busy six-year-old. I cry a lot over that loss. I know that I can be part of his life in other ways. He will come to my bed and tell me about his day. I can teach him from my bed, and we have already had many touching conversations. He is a strong and adaptable little boy, and I know that he will turn out to be a wonderful young man.

Damon get angry a lot. I cry, he yells, and Benjamin misbehaves. We all deal with the stress of this differently, and no one way is correct. I know why Damon yells, but sometimes I still feel bad. I try to let him have outlets to relieve his stress. I have even given him an out of our marriage, but he is determined that I am his to have. I love that he is not afraid of my future, and that he will stand by me no matter what. I am so blessed to have a spouse who can handle this without becoming overwhelmed. He has his moments, but it never seems to change his feelings for me, which is a huge blessing. I will need him in the days to come.

Now I just have to figure out what my life is. I do very little, sleep a lot, and mourn at night. I mourn what might have been, what I had hoped and dreamed of for my future. I worry about the medical realities that I may have to face very soon. I hope for remission, or an effective treatment, or cure, but plan for an early death. I don't want to leave my family, and I don't believe this will kill me for many years to come, but I do want to have things ordered so that they know I love them, and that they have reminders of me. It may be morbid, but I love them, and I don't want to be away from them, but on some level I feel like I might have to. Even paralysis, or loss of facility could take "me" away prematurely.

Many people worry that I am suicidal. I am not, but many in my position can become so. I have lost all that I deemed important to my identity as a wife, mother, and woman. I am having to rewrite that. I have a nasty problem of reacting to certain medications by becoming suicidal, and there have been times when I have felt the hand of God intervening to preserve my life. I don't know why my life is so important that it needs preserving, but I am grateful that I have never thrown away the experiences and opportunities that I do have. I have known despair, and hopelessness on a level that I never thought possible. I have suffered from hallucinations, and terrifying moments when I could not tell what was real. Depression is a monster that I fight regularly, and anxiety is no better. So much of that fight is unobserved. When I say I'm struggling to get up, and to find joy and connection in life, part of that is due to depression. I am trying to find an occupation that is useful, and that I can do with limited capacities. So far I haven't found anything. My therapist suggests I write my experiences, as they are rather unique, and it may benefit me to express and deal with my emotions in that manner. Some things are so sacred that I don't know if anyone will understand, others are so intensely painful, that I am afraid that if I write them out I will scare people.

I was a normal suburban housewife. I taught piano and violin, volunteered in my sons classroom, go to church regularly, and was in school to become a counselor. Now I am sick. I am one of the many who are chronically ill. When people say I look good, I want to scream at them. When I am told how I feel that day, based on other opinions, I just want to kick them, and hurt them and then tell them that they are having a great day, and should be grateful. When I am told to look at the bright side of this. I want to shut them in a darkened room for a week and ask them where the bright side has gone. I am angry. It isn't a feeling that I own well, or manage well. I am also so sad for all that is lost.

I believe in eternity. In eternity, I will know my Savior. I will know him as a dear friend and family member. I will have the children that I wish for in this life. Probably more than I can count. My husband and I will live in an amazing home, we will want for nothing. My pain and tears will be gone. We will teach those beautiful children all about science, and nature, literature, and art. We will love them and play with them. They will grow to become their own families and we will be surrounded by loved ones. We will be surrounded by friends. Friends that I cannot find or make now because I am unreliable and sick. My friends will understand all that I have endured, and I will understand what they have endured. We will teach our children together, and mingle our homes in ways that I have yet to imagine. Eternity is lovely, and wonderful and desirable. If I get only one goal, one pursuit, it is to become the woman who fits in that eternity. They woman who can be on equal footing with those amazing children an friends, and the woman who intimately knows and can live with her Savior. All of this is nothing compared to that. It is just so hard to remember. So hard to focus on that while they stick needles in your body, or when you are in pain, or when nothing goes right during the day. My bank balance may never be positive, and we may not get to go on vacations like other families, but if I can lead my family to the Savior, it won't matter.

I will endure pain, and there are many lessons to be learned. I don't want to. I want to live a happy, normal life. I want to be a mother to many children, and to have the ability to parent them in the way that I see other mom's do, but that is not my path. I must learn this new path. It is foreign and people don't talk about it a lot. There are few who understand, and even fewer who will endure this path with me for the long term. Hopefully I will find some of them soon. Hopefully there will be a diagnosis, no matter how grim. Hopefully I will be able to at least read and spend a little time with my family everyday. Hopefully I will remain able to care for myself until then end of my life, but I cannot predict the future. I don't know. Maybe UCLA will offer miracles. A diagnosis, a simple treatment, and a cure. I don't believe that will happen. I believe that this journey may be long and hard. I don't feel ready or prepared, but who ever does? My blog is designed to share that journey with anyone who may feel alone, or who may benefit. Even if it's just me. I have nothing to do tomorrow. It is late, and I can't sleep, because I hate being alone during the day. I can't drive, so I can't go anywhere, and my house is big and foreboding when I am alone. I have never had to spend so much time alone. So I sleep till my family comes back, and at night I listen to my husband snore, and take comfort in his presence. I need to learn to fill the days. It is my current goal, but with most everything I used to do being off limits, it would seem that I need to learn some new skills that don't require a lot of energy or dexterity, as my walking, writing, seeing, and such are not doing so well. I want to make my son a quilt, and a scrapbook that shows him my favorite memories, and who I am. I want to maybe find a way to earn a little extra money on the side, and I want to figure out how to be awake during the day without the anxiety. Lofty goals, I know. :) Maybe someday I'll achieve them.