Normal Mom

Happy Friday Everyone:-)

First, I want to apologize to those with Sarcoidosis for not mentioning I have it in the following story about my son. Scleroderma is more noticable in me and this is the true story. I'm not sure if mentioning one disease to my son at a time is the right idea, but 2 seems a lot for a 6 year old to handle. I haven't quite figured out how to tell him that part of it. I will keep you posted. Really, I think Scleroderma would be interchangable with any disease in my story. One disease isn't worse than the other. They ALL suck.

I posted a picture on Face Book of myself holding my son. The reason- I always felt self conscious when holding him the way I had to because of the condition of my fingers. I’m still self conscious, but I’ve come to a place where it no longer bothers me. The self consciousness is more like- stare if you want, I’m busy.

Before I had my son, I had stopped touching other people except for handshakes. I’m completely the opposite about handshakes. I love sticking my hand out just to watch someone’s reaction. Cheap entertainment for me, but I digress. My interest in touching stopped sometime in the 90’s. I’m not sure when, but one day I just stopped touching people. I shake hands when I meet people, but anything close or intimate- not so much. Simple things like putting a hand on the shoulder of a friend when she was crying or upset felt useless or fake to me. I was much better with hugs.

I didn’t really notice my aversion to touching others until the first time I held my son. I picked him up so awkwardly, I was afraid I was going to drop him. I touched him, and my heart broke when I realized I could touch him with my knuckles, not my fingertips. There are ways I could touch him with my fingertips, but to pick him up or hold him, I had to use my knuckles. I never missed touching anything until then. I became worried I wouldn't be able to do the things a normal mom could do. I became depressed about it and didn't even realize my behavior had changed. I was told constantly by friends, family, my son's pediatrician, and my shrink how good a job I was doing at being a mom but I just wouldn't buy it.

Now that my son is 6, I look back and here's what I do know and I want every mom to know, disabled or not. There is no such thing as a normal mom. I thought my son was adapting to my disabilities, but the truth is he didn't have to adapt to anything because I'm the only mom he knows. There was so much I put into my head about what I couldn't do, I forgot that there was so much I could do, especially in public. I made myself feel like a freak show and would miss out on simple activities so I wouldn’t draw attention to myself.

Kids don't judge. My son never thought anything was wrong with me. I allowed my mind to make a bigger deal out of things than they were. Every parent has something different about them. It could be hard to spot or in plain sight, but there's always something. Sure, disabled parents have personal obstacles and for most, those obstacles were there before they were parents. And really, parents who aren’t disabled have their obstacles too- so right there, the playing field becomes level. Disabled or not- parenting is challenging, frustrating, painful, smelly and will scare you right out of your shoes(Wow, I really had to work to clean up that last one. Thank you, Dr. Seuss.) Wanda Sykes used to talk about what parents told her about having kids, "yeah... but there worth it." She had no children at the time and called it a conspiracy by parents to recruit more parents. She was right. I think if all parents knew exactly how tough it was to be a parent, the human race would've been extinct a long time ago.


Now, I'd be making a huge omission if I did not mention my son noticed my hands were different at a very young age. I think it was before he could talk. He would take one of my hands and try to straighten them. Sometimes he would catch me off guard and it would hurt like hell. I would gently loosen his grip and tell him, "Mommy's hands don't work that way." His curiosity was satisfied with such a simple answer he would move on to something else. As he got older, he started asking questions. The answers started out simply "That's just the way Mommy's hands are" then became, "Mommy has Scleroderma.", followed by a simple explaination. Once he had that 75 cent word in his vocabulary, the questions became more complex, but at weird times. It was actually kind of funny watching him wrap his head around it. This was a typical conversation,

"I need to sit on the couch, this floor is not very comfortable."

He'd ask, "Mommy, is it because you have Scleroderma?"

"No Honey, it's because the floor is cold and hard."

About Scleroderma, I kept my answers simple and honest. I did not want to worry or lie to him, but simple worked well and still works today. That short attention span kids have really comes in handy sometimes.

When he was 5, I laid it all out for him. I sat him down and explained Scleroderma the best that I could and made sure he knew I was going to be okay, no matter what. It took him a while to process it, but I think he understood then and understands it now as best as any 6 year old can.

Short story long, I posted the picture because a person with finger contractures holding their kid with no make up on (Warning) is rarely seen. So there you go. Check it out. Parenting

Thanks for reading.
For more reading:
Parenting and Disability: Disabled Parents' Experiences of Raising Children
(I haven't read this yet, I just found it on Amazon. If anyone has read it, leave a comment about it. Thanks)
Foundation for Sarcoid Research
Scleroderma Foundation
Scleroderma Research Foundation

Doing Homework Restores Some Hope

In 1996, I lost part of my thumb because it had become gangrenous from severe Raynaud's. I had a non healing sore for months and unfortunately, it was too late before I found an orthopedic surgeon who diagnosed it and expedited the treatment through the VA in Madison Wisconsin. A surgery called a digital sympathectomy was performed on my right hand. An incision was made across the lifeline of my hand. Microscopically, the sympathetic nerve tissue surrounding the arteries in my hand was removed. Immediately, blood flow was restored to my thumb. What was left of my thumb quickly regenerated over the next few weeks while in a cast. (A sympathectomy does not produce permanent results. The muscle tissue grows back.)

Once the cast was removed, I was introduced to Occupational Therapy. I was only 2 years into my diagnosis and so much was going on, I had no idea there was a specialty in the recovery of my hands. Before the worst happened, I had only been given a leaflet on hand stretches to prevent contractures, but that was it. It turned out my OT was one of my biggest allies in keeping my hands moving for almost 3 years.
She used paraffin, connective tissue massage, passive range of motion and something called joint mobes. I forgot what it is short for but basically the OT stabilizes the finger on both sides of the joint and moves it back and forth (It's not that simple and don't let anyone try this on you who is NOT an Occupational Therapist. I have had chiropractors attempt this after I moved to California. Do not let them unless they are a licensed Occupational Therapist as well.)

Long story short, after moving to California, and thanks to some cuts in the VA after 2001, my new OT determined the treatment done by my OT authorized by the VA in Wisconsin would no longer be authorized by the VA due to cuts in funding. I was told by my new OT in CA that the VA could not justify ongoing treatment. About 2 years later, despite splinting and exercising, my fingers contracted severely and continue to be 8 years later. (pictures posted on Face Book)
Back to my homework... Yesterday, I had an appointment with Physical Rehab Medicine at the VA to specifically address the study I referenced in my July 16th blog from Current Opinion in Rheumatology: Musculoskeletal Rehabilitation in the Person with Scleroderma. I got to my appointment and realized I did not have the study with me, so I referred the doctor to my blog where she printed a copy of the study and presented it to the attending physician. After a 10 minute wait that seemed like forever, the doctor came back in and set me up with OT for 9 weeks twice a week for connective tissue massage, joint mobes and paraffin for my hands. I will just quote the study, “except for splints, these studies show improvement in joint motion, hand function and cardiopulmonary endurance (Poole, 2010).”

The doctor congratulated me for doing my homework to get what I needed. She had a very positive outlook about it. One of the best parts is, the OT that told me those treatments would not work, was going to be the one administering the ordered treatment. I really liked her personally, but I do like it when I am proven right. (I’ll try not to gloat!)

Now, because things went my way, this does not mean I expect to have full use of my hands in 9 weeks. That’s just unrealistic. Worst case is the treatment stops in 9 weeks, and then I become eligible again for another round the following year. 9 weeks twice a week is quite a commitment, and with some progress will make my home program more effective.

My treatment starts August 6th. Needless to say I am very excited and I will keep everyone posted on my progress.
And new, some unsolicited advice:

I have been told so many things over the years. A long time ago, someone gave me Echinacea. They thought they were being helpful because it would help my immune system. It helped it alright; it helped it cause a flare up because I have an autoimmune disease. I take medication to suppress my immune system. I didn’t realize boosting my immune system could cause a flare up. Don’t be afraid to bring in studies for your doctor or medical team when their treatment ideas do not meet with yours. Keep in mind this information cannot just come from anyone. Now, you can’t just bring in any study or opinion. You need to be sure the studies or clinical trials have been conducted ethically and that they meet criteria for reputable research. I have posted links below explaining criteria for a reputable study. By all means find other links, but be weary of links related to selling what is used in the study. That’s a HUGE conflict of interest. Do not let a practitioner, blogger, friend, or anyone try anything on you that you feel uncomfortable with or sounds too good to be true. My favorites are friends and family who tell you something "They" say will help you. My favorite question is, "Who are THEY? and can THEY provide any proof." I make fun of it, but loved ones mean well and only want to help. You don't have to be mean about it. I usually thank people and do my own research. If you find a study that shows results you are looking for, make sure it meets protocol and criteria. There are no miracle cures. DO YOUR HOMEWORK.


http://www.medscape.com/viewarticle/717087_7
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=402
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1089058/
http://clinicalstudies.info.nih.gov/what_is_study.html

Custody and Luaus

So a few weeks ago in mediation, my ex decided to try to get full custody of our 6 year old son. He told the mediator because of the severe contractures of my fingers, he felt I could not take care of our son. He could provide no conclusive evidence as to why other than, "because I say so". He managed to make the mediator angry, to my amusement (later). So a judge ruled in my favor for joint custody one week after mediation. My ex apologized on the way out of court, not to his credit- just to my amusement. So that's that.

On to a Mother-Son Luau at my son's school tonight. I'm wearing short sleeves and I am very self conscious about it. My hands look like out of place drumsticks on to end of my arms. If it was any other event, I would put a long sleeved t-shirt under my dress on, but what kind of chicken shit would I be wearing a long-sleeved shirt to a luau? That's no example to set for my son, right? So, despite my groans about it, I'm just going to go for it. For the record, I really, really don't want to. I feel like I'm jumping off some cliff all in spite of my own vanity.

WTF-Ville

I have been told my whole life that God has a plan. That we are here on earth preparing for the afterlife and everything happens for a reason. As I child, I went to bed every night afraid I “would die before I wake”. Until I was twelve, I tucked in my four stuffed animals and would lay down between them and the wall in my twin bed. Maybe I thought angels would take my stuffed animals instead of me. I did the sign of the cross, and silently said an Our Father, Hail Mary, Act of Contrition and asked God to bless everyone I could think of. On days I got in trouble, I would say a rosary- which was usually every day. After years of soul searching, nights of drunken stupors, years of angry words and of course, spending the 4th grade with bat-shit crazy Sister Kathleen, I have come to the conclusion the plan is- there is no plan. I had to accept anything can happen and I live in WhatTheFuck?-ville, Planet Earth.

Ten years later in 1992, the first signs appeared. They asked if I got regular periods. Several doctors at Balboa Naval Hospital told me this was all in my head, that I drank too much caffeine and maybe I need to quit taking birth control pills, (because nothing is more hazardous than preventing pregnancy-right?). Then, in 1994 at the VA in Madison Wisconsin, I was diagnosed with Scleroderma. Three months later I could almost pronounce it and one year later I could spell it (Denial? -oh hell ya).

I was in nursing school at the time and one of my textbooks had an exquisite picture of what Scleroderma could do to my hands. Crying hysterically I called my ex-boyfriend. I think anyone who saw this picture would have found it horrifying. Today I look at my curled fingers and frozen hands and laugh about how my ex-boyfriend told me I was being paranoid.

I have been to dozens of doctors. I have been prescribed “homeopathic” and “Natural
Remedies”, only to have them make my condition worse. For some reason it felt empowering to go ‘off the grid’ of western medicine. It made me feel in control. Before moving to WhatTheFuck?-ville, I made Denial my home.

I don’t waste my energy on anger and have no time for depression. I gave up on bargaining. Denial is my greatest defense mechanism and acceptance is not an option. Every now and then one of the five stages of grief worm their way into my head. Fourteen years, is that too long to be in therapy? What’s the anniversary gift for 15?

I am told that God has a plan and everything happens for a reason. I disagree. If he does exist; he created us followed by a series of random events he thought he could control. That’s no plan- he’s just as confused as I am. If he does exist, we are most likely floats in a terrarium he keeps in his office where he resides in WhatTheFuck?-ville, Universe, where he sits at his desk and procrastinates about writing poetry. Just like me.

Additional Links: CREST Syndrome
Elisabeth Kubler-Ross