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Mother’s Day

I had the best Mother’s Day yet. I slept for five hours. Now I normally sleep forever, according to my son, but yesterday we had a garage sale, and I spent a lot of time outdoors in the heat. I was TIRED. I also work with kids at Church in the morning, and they wear me out. I got a nice, long, uninterrupted nap, plush chocolate, breakfast in bed, mini roses, and a fantastic chocolate shake, which I had been craving. Now I feel guilty. I should be a better mom, but chronic illness does put you at a disadvantage.

While I was sleeping, my husband also passed out, and my son managed to enjoy a few adventures. He tried to peel and eat his first mango, which apparently was disgusting. He found a nice package of one of those sugar dipping packages and spilled it all over the floor. He ate my chocolate without permission, and he coated the couches with his blankets. He drank all the sweet herbal tea I had made, and spilled it all over the kitchen floor. Finally he managed to empty half a thing of toothpaste all over his bathroom, and then failed to mention it to his mom, who discovered it after he had gone to bed, and got to be the lucky cleaner-upper. He is busy. I think we forgot his medication today. Oh well. He also want mother’s day to last three days, hugged me all day, and let me cut his hair, which was getting quite shaggy and stuck up at odd angles all over the place. He made me coupons for hugs, kisses, doing his chores, and cleaning the whole house. He made me paper flowers, and he told me he loved me all day. I wouldn’t be a mom without him and his antics, so Happy Mother’s Day to me.

On a slightly different note, they messed with my medications, and now I’m not a happy camper. They lowered my dosage, and I started getting woozy and having blood pressure drops into the low 80′s again. I hate that. I get blood work done this week, and see my doctor on Friday and then the endocrinologist next week, but I wish that they could just find the right combo to help me feel good all the time. Apparently stress affects the medications effectiveness, and this week was a bit more stressful than usual. We got an amazing new dishwasher, and the disposal promptly broke – poor homeowners. I could barely call it in. Then my husband is busy and stressed with end of the year stuff, and I had my garage sale. I made a whole $10 and overall, it wasn’t worth the effort. Next time I’ll just donate the goods. We donated whatever was left over anyway. I did get some fun Sizziks die cuts from the donation center, so you give some and you get some. My son got an amazing Ninja Imaginext play set, which he has been obsessed with all weekend, and we had fun. I got a memory box. I also gave away my baby gear. It was time, but it was very bittersweet. I cried, and then was glad it was done with. I will give the more family oriented heirlooms to my sister-in-law who is having a baby boy in June and call it a day. If we ever do manage to adopt, we get to start fresh, and I’m sure I can find some nice family that is done with kids and will hand down their baby gear to us. It may even be my sister-in-law, or my sister.

The best part of the day, was when I called my mom to wish her a Happy Mother’s Day she was skyping with my brother who is in Australia. My brother is serving a mission for the Church of Jesus Christ of Latter Day Saints. He is in Melbourne speaking Mandarin. It is amazing, he is amazing, and we got to hear his voice for the first time in four months. They only get to call home on Mother’s Day and Christmas. What was equally amazing was that all my siblings called in around the same time, which means we all got to talk to him. It was awesome. He is having a once in a lifetime experience, and has changed so much from the quiet teenager that I knew. I have always been of or married it seems. He is 12 years younger than me. Now he is all grown up, on his own in a foreign country and thriving. I hope my son becomes as amazing a young man as he is.

Happy Mother’s Day to all. And on my final thought in this topic. Not all of us get to be mother’s in the way or time that we want. I wanted to have 12 children. Read the real book Cheaper By the Dozen and you will understand my dream life. However, one was my limit, and adoption is out of the question until we resolve our financial dilemmas, which with chronic medical issues is much more difficult than one would suspect. So one I have. I am eternally and immensely thankful for the one, but I miss not having more. I love being surrounded by kids of all ages, and their stages and joy and fighting and everything that goes with it. Oh well. I also remember a time when I did not have the one, and had lost another to miscarriage. That was a low and dark point in my life, and my heart goes out to those who would be mothers but cannot. I learned last night  and today that I will mother every child I meet and have the opportunity to. Nephews, nieces, neighbors and friends kids. I can’t help it. It is my nature, and it brings me peace and happiness. There are many ways to be a mother. I appreciate all the other mother’s who mother my child. He wouldn’t be the same wonderful kid he is without them, and I am grateful for my own mother, and my husband’s mother. We wouldn’t be who we are without them. So chin up. It’s one day, and we can go back to normal tomorrow, despite my sons attempts to extend all celebrations way past their due.

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The Tapping Solution

The Tapping Solution

I struggle with a lot of pain and anxiety. I am also a psychology major who studies the latest advances even though I don’t work in the field at this time. I just happened upon a technique based therapy that is based off of Thought Field Therapy. It is called Tapping, EFT or Meridian Tapping. They are having a world summit this week and next that you can access online for free. They also have books and other resources that provide the basic information on how to try this technique on yourself.

I am skeptical of almost all Eastern medicine, and chakra based medicine, but this technique is based on acupuncture and acupressure points, and that has a ton of scientific backing, so I decided to try it. It is all done by tapping on different parts of your body in a specific pattern while thinking of a limiting belief, or emotion etc. The technique and its details can be found here http://thetappingsolution.com.

So I started with some things that made me frustrated or angry about my illness. It was amazing how fast those feeling faded, and I was better able to cope with my current situation. I have since used it on a variety of topics, listened to multiple professionals and learned many ways in which it can help me. I would recommend that everyone at least try this technique once. It can’t hurt, and for many it has amazing healing results. Check out their Summit, and learn the basics.

Someday I hope to certify in the method and become a practitioner in my private practice as a counselor. I hope to use on children with ADHD and autism, and to help their families and others with chronic illnesses or conditions. I have used it on my own child with amazing positive results. You just have to test it for yourself, and you’ll see what I mean. A great book to help with understanding the science and the process is Discover the Power of Meridian Tapping by Patricia Carrington, Ph. D. It is what I am reading now, and I would definately recommend it.

I selected this post to be featured on Mental Health Blogs. Please visit the site and vote for my blog!

 

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MS Walk

My son and i recently volunteered at the Las Vegas MS walk. It was amazing. There were vendors and people with free food, and drinks. There were so many walkers. Some walked with walkers, and others went the route in wheelchairs. I was inspired and humbled that my health is as good as it is, and that there is such community support. I got to hand medals at the end to those who did the walk, and see the support of families, friends and community groups. It was truly a life changing experience. My son handed medals with me. We loved to give them to the kids who participated. He saved two special medals for Grandma and Grandpa who both donated to the MS society and walked the 5K in support of me. Their support is priceless, and my family would not have survived this year as well without them.

I also got to see my doctor and his family outside of the office, which was refreshing. He has a great family, and I wish that we had the opportunity to know each other more as people and not as patients and doctors. I wish that with all my physicians. It gives the whole medical field and practice a different feeling. As an individual and not a disease, I am interesting, and fun and full of life and purpose. As a disease, I am rare, and confusing, and difficult. I like being an individual a lot better.

I also had the opportunity to talk about my doctor with many other patients and advocates, and learned that he is one of the best and brightest. I feel so much more secure in my diagnosis and future care because of their high opinion of him and his abilities. I know from seeing him, that he is an amazing doctor, and I am fortunate to have him in my area, and to have had him there as I was diagnosed with hypophysis. Between him and my endocrinologist this disorder has only been seen twice, and they mostly know of it from books. Without them, I may have lost my life, or spent more months suffering and taking medication that was unnecessary or harmful. I believe in God, and I know he brought me to this point and to those doctors right when I needed them. For those who maybe don’t believe. Believe that miracles happened in my life for whatever reason they are available to us.

I hope to continue to support the MS society in our area, and to be part of many walks. Even if MS ultimately is not something I ever have to face, my brief walk in that path has taught me much, and given me great compassion and empathy for those who must.

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Confusion

So, I was undiagnosed with MS, but diagnosed with an even rarer disorder called autoimmune hypophysis. I have spent the last several weeks in a daze of wondering what this all means. My major problem is I still strongly believe I have MS, and I am worried that my doctors have just sprung upon this other diagnosis like it was liquid gold, without really considering the whole picture, and now my MS is going untreated again.

On the bright side, the treatment for the autoimmune hypophysis has increased my energy, stabilized my heart rate and blood pressure, and fixed many of the other problems I was having with fainting and such. Hypophysis affects about 300 people in the US per year. Most have a tumor, or some sort of swelling/infiltration in their pituitary gland that shows up on MRI, and causes the pituitary failure. My adrenals and other related organs have shown strain for years, but my pituitary looks perfect on MRI, and has no known issues until March. Then it acutely decided to fail, which in most cases, the patient would end-up in ICU without a clue as to what is going on, and many die. So, in a way, the diagnosis of MS saved my life. When I went the hospital they immediately put me on steroids, which is the treatment for MS and hypophysis, although different steroids are required for different disorders. However, the dose of steroids dealt with the worst effects of the hypophysis and delayed acute symptoms which may have led to my death.

I remember a day where the steroids had worn off. I had been consulting with a neurological specialist and other doctors. All of them had looked at my blood work from the hospital that showed the pituitary failure without recognizing what had truly gone wrong. I felt terrible. I fainted on standing. I could not drive, or even walk across my house because my blood pressure was so low, and my heart rate was so high, just to keep blood flowing to my brain. I called my doctors and told them I thought I was dying and begged them to help me or to help to know what to tell the ER when I went in that night. It happened that I had an appointment with my endocrinologist the next morning. As a unit all my doctors told me to wait until I’d seen the endocrinologist. I saw him the next morning, where he identified the pituitary failure. Repeated the blood tests and just in case placed me on hydrocortisone. After I’d the blood work done and started the hydrocortisone, it was like my life was restored to me. My blood pressure is still low, but I have energy enough to get around. I am no longer wheelchair bound or fainting on standing.

This is a lifelong diagnosis. I will require constant monitoring, one of those awesome medical alert bracelets, and there is no known prognosis for this disorder. I also may still have MS to go on top of all the fun that is my life. We just get to wait and see on that one.

I am grateful that I didn’t die. That there protocols in place, right or wrong, that saved my life. I am happy that the medial regime has restored some of my life quality, and has allowed me to resume some of my roles as wife and mother. It has been a really hard year. We are broke, and I have been referred out-of-state for further treatment since this diagnosis is so rare. Johns Hopkins is currently the only place i can find that is doing research on this disease.

I still have neurological symptoms. I am still unable to work. I still have good days and bad. I still don’t know what the future will bring, but I am alive, and functioning at some level.

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Support Group

I went to my first MS support group meeting this week. It was extremely scary. They were wonderful and kind, and connected me to other resources, which is great, but they were also in wheelchairs, and talking about bowel and bladder problems, and I couldn’t take it. I came home and freaked out. I don’t want to be them. I am them, but I’m not yet. I don’t want to go there, or think about the future of MS and its horrible effects. I don’t want to watch people with my disease in wheelchairs that they must control with their mouths because their bodies no longer  work. I want to be the one helping them. Not one of them. Yet, when I come home, I have a wheelchair, two different walkers, a shower seat, and a 3-in-1 commode. I shake uncontrollably, my blood pressure is so low I randomly black out when I stand or sit to fast, and my MS has progressed really fast this year. To top the day off my husband asked me when I would like to be placed in a care center. It is a valid question to which I offer a huge NEVER. I never want to leave my family. I want to raise my son, and watch him marry. I want to hold my grand babies and maybe be able to adopt another baby of my own.

Then this week my husband and son were sick. I am still recovering, and not doing so well, and I cannot take care of my son for days on end.  It has been a hard week of no sleep. Mourning what might have been, trying to accept what is and must be, and taking care of a sick family when I am hardly in any shape to take care of myself. People ask what they can do to help and I feel lost. Everything, and nothing. Do my laundry, cook us meals, help me figure out our taxes and pay our bills, clean the bathrooms, and floors, and make my son feel loved and secure. Then, find and research MS and its implications, possible treatments and cures, find ways to afford such “cures”, shop for groceries, let me vent about how scared I am and how hard this is. Find ways to make my bathroom safe and handicap accessible. Build ramps to my doors so my wheelchair can get in and out. Make the government accept my disability claim and pay teachers more so we don’t have to worry so much about money, file for bankruptcy or pay off our debts, schedule all the doctor’s appointments, and an appointment to get our car fixed because it sounds funny. Replace the dishwasher, it hasn’t worked since we moved in. Sign my son up for karate or soccer or both and take him to the practices and games for me. Call me and tell me happy and good things about life and the world. Help me find a way to be useful. Let me hold your babies even though I shake and sometimes am weak. I will sit down like a little kid and be extra careful. Let me be sad or happy, or angry for a while. Take me to the store and coupon with me. Find a way to help my husband with his stress, and to help my son and him cope with this horrible illness. Play with my son when I cannot, and watch him even if he is sick when I am too weak and hurt. Create scrapbooks, letters, pictures and videos so if the worst happens my son has memories of his mother and always knows how much I love him. Do all the things I would do if I could but can’t. How do I tell you what to help with? Where do I even start, and will I have a chance to do this before this disease takes more away?

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Goals

Multiple Sclerosis requires that a person constantly redefines themselves. Because of the ever changing symptoms and illness progression there is a constant need to find who you are in spite of, or outside of the illness. That is my current goal. I loved to play piano and violin, but that is out of my reach. I can still play a little, but I will never be a concert pianist. I love to read, but occasionally blurred vision makes that impossible. So, without a job, the ability to walk unaided, blurred vision, varying symptoms, and other issues, who am I?

I am a mom. Not a great mom. But, I am still a mom and nothing can change that. I may not take my son to the park and run around with him a lot, but we read in bed, and play games together. On bad days, he keeps me company and I am the best listener. :)

I am a wife. I am not a great wife, but I love my husband, and tell him and show him in every way possible. I am lucky that as the challenges have come his response has always been, “We’ll handle it.” Not you’ll be fine, or I’ll take care of it, or it will pass, but “we’ll handle it.” It is his willingness to walk side by side with me during this journey that makes him the perfect husband.

Last of all, I am a person. I may have varying abilities, bad days, and have lost some of what I love and what makes me feel fulfilled, but there are always things to learn and try. And not to get too religious on this audience, but I am a daughter of a Heavenly being who loves and cares for me and my family. This alone should be enough. I like to be busy and doing. I like feeling like I accomplished things. Now I rejoice in getting the laundry done, and love my little backyard patio and garden. I participate in support groups, and am trying to reach out to others and build relationships because I learned those are what really matters. When I talk to people, I try to give them my undivided attention. I’m still not great at things. I get angry at this illness and its limitations. I get angry at people that cannot understand, or don’t follow through. I am far from perfect, but I want to handle this gracefully, and so I focus on what I can control. It is never easy, but it is getting easier.

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Hospitalizations

I have been absent from blogging for a while due to multiple stays in the hospital. One of which is a sensitive topic that I hope to address in a manner that is helpful and insightful.

At the beginning of February, I became extremely depressed and suicidal. There were no precipitating events, nothing changed. I just decided I would rather die, and started to make plans to do so. I have a wonderful life, and this sudden onset of despair is unlike me. Sure I have suffered from depression for years, but I am a Psychology major, and was studying to become a counselor. To go from okay to suicidal in a day was strange. I told my spouse, and my therapist. We managed it at home through frequent check-ins, removal of anything I would “use”, and sleeping pills because I had not been sleeping. It worked okay. When I saw my neurologist and explained the bizarre nature of my depression, plus the fact that I was showing signs of an MS relapse, she insisted that I be seen by a psychiatrist as quickly as possible, which meant the ER.

I heeded her advice, because there had to be a better way than the life I was leading. I want to feel happy and find joy and purpose in life. So, I went to the ER, and was placed in an inpatient facility on a 72 hour psych hold. Suffice it to say it was an experience I never want to repeat. All I could think while there was I know all this, and I am not as bad as the people who are around me and really need these services, but who am I to judge?

I did have a fantastic book with me entitledIt’s Not All in Your Head: Anxiety, Depression, Mood Swings and Multiple Sclerosis by Patricia Farrell. Basically the book explained that Multiple Sclerosis can cause severe depression and suicidal thoughts, not just because of the changes and adjustment issues, but because of the inflammatory process that affects you on a cellular level. I refer to this because a day after I was admitted, the depression left as suddenly as it came, and I was happy. Being happy in a psychiatric hospital before they’ve changed medications or done anything significant is almost unheard of, but I honestly was.

Then I started losing control of my left side, and was promptly sent home. Within a week, I had a 6 day stay at another hospital for an MS flare that caused uncontrollable tremors, weakness and numbness on my left side, fingertips and such, and loss of vision in my right eye. I wonder if the depression was part of that flare?

I did learn valuable lessons in all of this. I learned that I love my life  no matter my limitations, and that I have great support. I learned that I know how to take care of myself if I just put into practice the things I have learned. I also learned that I need to be careful to not let this disease isolate me. Oddly, I made friends with others who were temporarily on psych holds. Some I hope to keep for many years. I learned that I am stronger than I ever could imagine. I came home in a wheelchair. I shake so bad and my blood pressure drops so low that it is dangerous for me to walk around when I am home alone. I have a 3-in-1 commode, a shower chair, and we are installing grab bars and other adaptive equipment. I am only 31. Hopefully new drugs will slow this disease. Hopefully a drug in trials right now will help with the depression side of life. In the meantime, I am coping. I shake constantly now. Nights are the worst because I cannot sleep. Wheelchairs are cool and allow me to go places with my family that I might not otherwise have the ability to “keep up” or stay as long. These changes happened fast, and I am still adjusting. I still struggle with depression, but it is nothing like those two weeks where I felt like I wasn’t me anymore. I’m curious if this has happened to others. In the future we’ll just weather the storm like all others, and I may seek treatment for a flare rather than psychiatric care, but you never know. I hope to never experience that again, and have increased empathy and sympathy for those that struggle like that daily. It is a fight I do not envy. Give me wheelchairs and support bars any day.

On the upside, my son handled the wheelchair well, and I have been able to get out and enjoy my family. I do not drive because of blood pressure issues, but look forward to that changing. Social Security Disability denied my first application, and I had a wonderful friend help me appeal it. I learned that I am not alone, and that people care deeply for me and the well-being of my family. There were many who were alone, no visitors, nowhere to go but the psych hospital. I cannot imagine such an existence. It is for them that I truly mourn and wish that there were better services. Gratitude and time have been great healers. I would love to support anyone who is going through similar difficulties. Please just contact me. Know that you are not alone, and that it is a chemical disease, not something that you did wrong, or caused. Also know that help is an e-mail, phone call, or doctors visit away.

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ADHD

My son is seven, and we are in the process of having him formally diagnosed with ADHD. We have suspected for years that he has some form of hyperactivity, but he was little, and we didn’t feel the need to medicate or initiate some other dramatic intervention, but with first grade, and my illness, his symptoms have become harder to manage, and quite obvious.

So, last week, we went to our pediatrician, filled out the screening forms and are not trying Straterra. It has made a world of difference, and he isn’t even on the full dose yet. His teacher has noticed. He reads past the first three chapters, and he willingly does things like homework, and cleaning and going to bed. For the first time since we’ve had him, he’s wanted to go to bed. For the first time since we’ve had him, he’s been able to focus and carry on a long conversation, or listen to directions. We had him see a Child Psychologist as well, and she agrees with the diagnosis, and will help us work with his behavior in other ways, and we are on a waiting list to have him tested by a neuropsychiatrist. It is a long and ridiculous process, but I will do anything I can to help be happy and productive.

It was hard to admit that behavior intervention alone wasn’t working. It was really hard to decide to put him on medication. My family did not handle that announcement well. We researched, prayed, and tried every method that his psychologist mother, and teacher father could think of, but our relationship was starting to suffer, and his grades and behavior at school were a problem.

My son is wonderfully smart. He reads like a pro, loves to draw, is artistic and creative, and loves to learn. He makes weird connections, and remembers things that he heard in passing, and then will use it later to describe something to us. We love him. We didn’t want to medicate because we were worried it would change his personality. Instead, it has brought out the best in our son, and I am happy. If things change, we will work with different medications and therapies until we find a good fit, but it has been a step in the right direction for our family.

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Depression

I haven’t blogged for a long time, because I have been depressed. I hate that feeling like nothing matters, and all you can do is get out of bed to take care of the bare necessities. My family notices it and suffers too, but it is part of the MS, the MS diagnosis and adjustment, and something that I have struggled with for years. I have all the classic symptoms, and mostly I am able to control it with medication and therapy. These past few weeks have been different. MS has taken a lot from me that I wasn’t ready to give up, and I have been afraid to try new things because I might lose them too.

This mindset may seem stupid, but with an unpredictable, chronic disease one never knows what symptoms will crop up next. For example, all summer my eyes were so blurry I couldn’t read, watch t.v., or use a computers. I just learned that hiking is out, as I am too unstable, and we also decided not to adopt, while I watch many around me either have babies or announce they are pregnant.

I went from a part time job, full-time school, volunteering, and waiting to adopt, to nothing. I sit at home and wonder what I am supposed to do now. i still have goals and dreams, but can I rely upon my ability levels to stay so that I can accomplish those goals, or should i just accept my loss of control, and pretend I’m on vacation for the next however many years. It is an interesting life crisis, and one I have yet to answer. People reassure me that it will not last, and that once I stabilize on the medication things will get better. I am looking forward to that day. In the meantime I am trying not to depress my readers, friends and family because I am depressed.

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Fatigue and Loss

Generally I sleep up to 14 hours a day. Sometimes more. Usually it is hardly noticeable because I sleep while my husband and son are at school, and am up and at it before they get home. Lately it has been an issue. Whenever they are home, my lack of ability to keep normal hours becomes difficult.

On the other side, I have a hard time going to sleep at a normal hour. I am tired early, but when bedtime rolls around I am raring to go. In fact, I have more energy then than I have had all day. It is annoying to more than just me. I disrupt my husbands sleep, and I am awake when I want to be asleep, and asleep when I want to be awake.

Apparently I am not alone in this conundrum. It is a symptom/sign of many types of chronic illnesses. I’ve noticed that the more stress I am under, or the busier life gets the more I need to sleep. It is the reason I cannot work. A half day of work will put me in bed for two days. I have to store up energy for a weekend of fun, and then play catch-up through the first of the week to recover. It makes getting anything accomplished painfully slow.

I have tried just about everything. I take melatonin, sleeping pills, klonpin, and have tried several other remedies to try to help me sleep at normal times. I follow strict sleep guidelines, and have consulted with multiple professionals. To no avail. Then we tried the other attack. Taking drugs that are basically amphetamines to help me have energy during the day. They helped, but would leave me with raging headaches, and I would suffer the same aftereffects of a full days work if I stopped taking them even for a day. I didn’t like their effect on my body, nor the side effects so they are out. Now it’s just me, and occasional doses of caffeine. I use the caffeine to keep my heart rate up because it likes to go dangerously low at bad times. It’s especially prone to that in reaction to flares, or the prednisone I get when I have a flare. Either way, I have to start using an event monitor tomorrow, and I have been thoroughly scanned several times because it has dropped so low for long enough that they have considered putting a pace maker in. I am not opposed to a pacemaker, but i am young to have one, so they are overly cautious. Sometimes I wonder if the fatigue isn’t caused by my heart rate being too slow.

The heart rate issue is caused by autonomic disregulation. Basically, the functions that are generally run by your autonomic, or automatic systems stop working. It is a symptom of MS, which no one, including my doctor, knows what to do about. They apparently discuss it at conferences, but nothing has been decided except to manage it as best as anyone can.

So I am tired. Bone tired. Painfully tired. So tired every muscle and bone aches, every part of me wants to sleep despite my fighting it. So tired it makes my physically ill. i hate it. I would much rather play with my family, craft, read, blog, or do just about anything than sleep away most of my day and my life. My life is already shortened, and I resent the fact that I have to spend a lot of that sleeping. I fortunately believe in an after-life, and so I’ll get to do there all the things I didn’t have time for here. That is my hope an my comfort.

There I will dance, and sing, and play beautiful music. I listen to music and cry a lot these days as it is difficult for me to play at the level that I used to. I want so much to be able to create the beautiful music that I listen to, that I love, and that I once could but no cannot. So I cry.Then I log onto iTunes and buy more of the beautiful music that I love because if I cannot create it, I can still listen and be part of it that way. I cry about a great many other things that I have lost, but that will be the topic of another post. Everyone has dreams that they won’t get around to in this lifetime. What is yours? i would recommend that you not put it off if you have a choice. Life takes everyone in funny directions and changes dreams, abilities and options. Mine have changed drastically in a matter of months it seems. In hindsight I would have done things differently, but I guess that is what experience is for. I know I won’t put off things that i love any longer.

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