Courage is...

Unless you have courage, a courage that keeps you going, always going, no matter what happens, there is no certainty of success. It is really an endurance race. ~ HENRY FORD, Theosophist Magazine, Feb. 1930

Goals...score!!

Recently, I have been learning, at a deeper level, the amount of energy that it takes to maintain my defences. (I'll probably post something about this next week).  Anyway, it takes my energy away from meeting and enjoying reaching my goals.  My goals are sort of broken down in to short-term and long-term goals.  In no particular order, these are my goals (may or may not be realistic):

• Have my husband sleep in the same bed with me.
• exercise and have a personal trainer
• bake and cook again
• grocery shop
• volunteer
• reduce therapy hours
• set up a living will with my husband
• get healthy
• go to church
• go to church small group
• see Wicked
• to see in concert Crosby, Still and Nash; Chicago with Earth, Wind and Fire, Carly Simon, Barry Manilow, Olivia Newton-John, Elton John, Eric Clapton, Adam Lambert, Creed, Rob Thomas, Jason Mraz, Train, Michael Buble, Kelly Clarkson and The Gay Mens Chorus of Los Angeles.
• Prepare for taking the GRE.

• Earn my doctorate in Clinical Psychology
• Use my education for becoming involved with my church, mental health, developmental disabilities, and GLBT.
• get involved with advocacy, counseling, speaker, counsult, train and set up programs for the above.
• write a book
• take culinary classes
• become a Nordstrom personal shopper with only M-F and off by 6pm.
• meet people that I only know from online
• terminate therapy
• be completely off medications
• visit Epcot Center, Hawaii, northern california, New York, washington D.C., Europe (England, Italy and Greece)

I need to get better before I can complete some of these...But, just imagine the possiblities...I can have control over what I want out of my life.

What Would You Do?

I know that this is not a usual post, but I want opinions.  I have an antibody that is low, so I have been receiving infusion therapy/immunoglobulin therapy every four weeks for about six months now.  The following is a description is from Mayo Clinic:

Immunoglobulin therapy. Also called gamma globulin therapy, this treatment can be a lifesaver for people who have an antibody deficiency. Immunoglobulin consists of antibody proteins needed for the immune system to fight infections. It can be either injected into a vein through an IV line, or inserted underneath the skin (subcutaneous infusion). Treatment with intravenous gamma globulin is needed every few weeks to maintain sufficient levels of immunoglobulins. Subcutaneous infusion is needed once or twice a week.

Getting my rate of the amount given by ml per hour.  I am very sensitive to the rate and last month we figured out that my rate should not go above 60 ml, for which, the order is written as such. I am receiving it at home due to my allergies to all types of fragrances and some odors. It takes about six and a half hours at that rate.

Yesterday, the nurse that was sent to my home was very nice.  However, I suspect that she increased the rate to 70 ml while I was napping. When I woke up from my nap, I did not feel good.  I was beginning to get a migraine and was nauseated which are some of the symptoms that I had when the rate was above 60 ml.  I need to use "the little girls room" and had my husband go with me. We checked the rate and it was at 70 ml. 

I went back to the living room where I was receiving treatment.  I told the nurse my symtoms and she stated that we needed to lower the rate.  Then, out of character, she asked what rate do I want it at.  I asked what is the rate currently and she stated, "60." I asked again, as I was not feeling well, (it was a test and a way to give her an out).  She stated "60," so I told her 50 ml. This morning at 12:30am I woke up because my right forearm was red, blotchy and itchy.

Now, I'm trying to decide what to do. I could just call and complain.  Wait for the pharmacist of the home care center to call due to my side effects being charted. I need to schedule an appointment, so I could request that I not have her assigned to me again. There are also other options.  What do you think I should do or what would you do?

World Down Syndrome Day

Yesterday, March 21th was World Down Syndrome Day.  This is a subject near and dear to my heart as up until I stopped working, I dedicated seventeen years of my career to working with individuals with developmental disabilites including those with Down Syndrome. Seven of those years was as a social worker. I have a special interest in adults as when people with developmental disabilities are young they receive lots of attention and resources because they are cute. When they become adults, they are no longer cute and are often forgotten by friends and family and for many other reasons.

Down Syndrome is a genetic disorder where there is an extra 21st chromosone.  There are different types. In 1866, Dr. John Langdon Down, was the first to accurately describe the description of Down Syndrome thus the condition was named after him. Down syndrome occurs in approximately 1 to 800 to 1,000 births per year. The older the age of the mother, the more likely it is to occur.

In 1929, the average life span, if they survived, was 5-6 years old.  Now it is close to normal age.  One of my clients was in her 70's. Most individuals with Down Syndrome are in the mild to moderate range of mental retardation and are able to live full productive lives, live independently, be employed in the community, maintain friendship, have sex, have children and get married.  It should be noted that males with Down Syndrome are sterile, but there have been rare cases.  Individuals with Down Syndrome also marry others with a different type of disability.

Individuals with Down Syndrome have some health comonalities, such as, developmental delays, gastrointestinal problem (40-60%), congenital heart disease (40-60%), hearing (recurrent ear infections) and vision (cataracts) problems, hypothyroidism, excessive weight gain, smaller bones, increased white blood cells, recurrent upper respiratiory tract infections, constipation, behavioral changes and depression.  Physical features include flat midface, upward slanting, small oral cavity, redundant skinfolds, fingers are short and stubby, toes have increased spaces and hand creases.

When it comes to personality, my experience is that people with Down Syndrome usually are very friendly, caring, people pleasing, easy going and like physical affection.  However, if they do not like what they need to do or are asked to do something, they can be some of the most stubborn persons.  One thing that is helpful is that they like to please others and like praise.  This means that reward systems and time out works well.

I had one client whose supervisor came running to me saying, "Nancy is having a seizure."  I laughed and said that she doesn't have a seizure disorder. When I got to Nancy I said, "Nancy you don't have a seizure disorder, so stop it."  She immediately stopped, smiled at me and attempted to give me a hug.  I told her that you don't get hugs for faking a seizure, but you do if you are working.  Once she started working I immediately praised her and gave her a hug.  This is one of my favorite experiences and they are much smarter than most people give them credit.

As the video indicated, individuals with Down Syndrome have same needs as everyone else. Like anyone else friends and support are an esential part of life.  The following are just a few of my pet peeve when working with adults and teenagers:

People with Down Syndrome usually know that they are different than others and are often teased or harrassed and called retarded. Although they are retarded it has negative connotations which hurt their feelings and reinforce feelings of low self-esteem.  I hate it when someone uses the word "retard" to insult another person. This is also hurtful.

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  Individuals with Down Syndrome usually have some speech impairments which is frustrationg for the individual and often causes them to give up trying to communitcate or think that they are bad for being unable to speak properly.  With my clients, I used to tell them that "it is my job to try to understand you, but I may need you to slow down or use other words. I would also ask them to be patient with themselves as it is important for me to hear what you want to say."  It takes patience and you get better at it as you become more familiar with the person, just as it is with other people that you meet.
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  I hate it when others speak louder or speak in a condensending manner.  This would be insulting to us and is for someone with Down Syndrome.  They are not children to be spoken to in such a manner.  If you had a stroke, would you like it if your family spoke louder and treated you like a child. I usually speak slower and use simpler words, if called for.  Often they may have quite a sense of humor, so it makes it more fun.  Other times, I tell them that it is important for me that you understand, so please ask me if you don't understand what I am saying.
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  I hate conversations and meetings that could happen whether the person is there or not as often people talk about the individual rather that involve them in the conversation.  They are told what to do, rather than being asked what they want.
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  I hope that this gives you an idea and some background regarding individuals with Down Syndrome and that you will think before you speak because you may not know that you are hurting someones feelings or offending someone. Think about how you would like to be treated.

"God of this City" ~ Chris Tomlin

Watching and Listening in the 1950's

This post is dedicated to my friend Mike Golch of the great blogs Rambling Stuff, MJG's Loonytoon Central and his new blog Nut Case 1.  With much delight, I follow all of them.  Please go check them out. Mike is also a wonderful caring, funny and thoughtful person which is demonstrated in his blogs and comments.

Still in process with Grandma...

I am still trying to process my Grandma's passing. At the last minute, I changed what was to be read at her service, so I thought that I would share it here.  Please, forgive me for my repetition. The following is what I wrote and was the final version of what was read at the service:

Grandma,

I don’t even want to write this letter because I never wanted to say “goodbye.” But, I need to say, “goodbye.” Somewhere in my head grandparents never go away, but that is in my head like some of your “crazy” thoughts were. I imagine your bony strong fist hitting me now. I know that you didn’t go away and leave me, but that is how I feel. I really am happy that you didn’t suffer much and angry that you had to at all. I didn’t want you to die and am having a really difficult time acknowledging that I don’t have you to visit or call anymore…or tease. You were not supposed to leave…ever.

(I have know idea who the people on the left are, but this is a tribute to my grandma, so this is quite fitting.  She would purchase picture frames and leave the original picture in it and everyone would ask who is that...LOL!!)

I don’t think that I would ever been ready for you to leave me. I know that we didn’t express it directly often, but we did continually express our love for each other. I know that you loved me and I hope that you know how much I loved you.

I’m sorry that my health prevented me from seeing you more during this last year and especially on the last day that you were talking and joking. I really wished I could have been a part of the “fresh hamburger” event. But, I love hearing it and telling it. I am glad that you were able to recognize and say, “hello” to both Adrian and I. I’m glad that I was able to hold your hands and let you “kill” them while I “head butted” you when you were in pain. *BONK* For me, that physical closeness was such a gift. I just wish that I could have felt your skin more, for you not be in pain and for you to be able to tell me “leave you alone or shut up!” I hate remembering the pain you were in…even in dying you were super strong…ouch!!

I keep remembering the last time that I saw you was in the hospital. I kept telling myself that I wasn’t going to see you due to my health risks, but when I got the telephone call at 3:15 AM telling me that you were not going to make it…All I started to think of was that I needed to say “goodbye” to you and be with family. Again, you brought the family together. We all love you. I love you. I can hear you saying something funny about the time it took to get to you, that I actually took time to wash my hair and about the mask and gloves that I had to wear. I can hear you make funny sounds and faces about them.

I miss you and some of the normal everyday things like going grocery shopping, recreational shopping, going shopping for some gift, purposeful shopping and more shopping. I know that it wasn’t about shopping, but I do know that when you were younger that I would get tired before you. I think that everyone got tired before you. Going to the market with you seemed like an all day event to me as a child. It seemed like you knew everyone in the neighborhood and just HAD to talk with everyone.

Oh boy, did you have a sweet tooth and could eat despite what others saw later. I liked getting money from you for the ice cream truck…but the truth is that you wanted one too! When Halloween came, you would purchase extra candy and stash it away. Well, I’m sure you knew that most of us knew and that we “stole” some and that you probably purchased extra for yourself. The boxes of See’s candy that came to your house were different…they all had holes on the undersides. I guess that is just the way they were made.

I’m so blessed that I have very young memories of you and living with you like going to the market, mall, pharmacy, optometrist, post office, etc…normal everyday activities and you were always friendly. Although it bothered my sinuses, I miss the smell of your make up, your bedding and clothing. I remember bouncing into bed between you and Grandpa and just chattering away with the both or you. I remember holding your hand feeling like my life depended on it…everyone was so big!! Even though, I don’t have a specific last memory of you not being in the hospital, I have a wonderful sense that when I was young you protected me, made me feel safe and secure…your sweet treats which you actually wanted were always nice too. I enjoyed helping and eating dinner with you and everyone else.

You have to admit that you we’re a bit obsessed about vacuuming as you vacuumed twice per day because of the dog hair and even tried to vacuum the dog. Even when you broke your leg and it was in a cast you tried to vacuum. You sat in one chair and your broken leg was on other while you tried to move around with the two castered chairs vacuuming. You were always a silly woman and the whole family has inherited that...Silliness will live on.

You were always a good sport and willing to play all the children’s games with me. One of the most memorable times was when you played the board game “Beat the Clock” which was based on the television show. I’ll never forget you sitting, and then grabbing your ankles and had to walk in a large circle to beat the clock. I think it was called a duck walk. We were all laughing. You did really well because you didn’t tip over even while laughing. But, then again you were really strong. At one Thanksgiving, there was a pull up bar for doing chin ups and no one not even the adult men could do one, but you showed them you did three!!! You weren’t a woman to be messed with.

You always had this thing about curling her toes all the time which we dubbed the “Adachi curl.” You were even doing it in the hospital bed. I didn’t know that was strange until I was married as everyone in the family always did that. The spouses probably all thought that it was strange including using our feet to pick up things. That is from your side of the family and will carry on.

One of my favorite memories of you was at one of the Bingo family reunions. Down this long hallway, auntie Tetsuko and you saw each other. Immediately, you both assumed a pseudo-sumo pose and “tough” faces and made your way down the hallway to greet each other. When you were close enough you hit one another and laughed then hugged and kissed each other. I was laughing so hard that it made my stomach hurt. Oh, there are so many memories with you that that are warming or make me smile. I already long to hear you talk, repeating me over and over, laughing, making faces and just being around and just to touch you.

My memories and how you helped to raise me are wonderful hugs from you or a hit on the arm, both convey the same thing. It really brings a smile to my face and warmth to imagine you and Grandpa seeing each other again. I hope you didn’t hit him hard enough or make him laugh enough to fall off his cloud. I’ll continually receive hugs from both of you via the fleece jackets, I finally “stole” from you. I really miss you and Grandpa. But, today is “Goodbye, Grandma…I love you and miss you so much that I hurt to my core.” I love you and always will…Coleen

Past Journal Entry: January 2006 ~ Therapist Conflict Part II

Past Journal Entry: January 2006 ~ Therapist Conflict Part II

...I started to go away when I remembered, so I looked at you to try to stay present, but went away more when I felt like you weren't .  Then, the women walking in the hall made me flashback to hearing my mother's heels coming down the hallway and the door flying open or door being slammed and my getting hit, so I went away more.  (starting to tear up)

Really hurt to feel like you weren't listening or even there...partly trigged how alone I felt with my thoughts and feeling growing up.  Like it wasn't okay to talk last night.

I had difficulty getting home because I started to sob when I got on the freeway and cried all the way home.  I stopped a block away from home to try to get it together befor I went home.  Took about 10 to 15 minutes.  Then, I went straight to bed not wanting to interact or let Adrian know that I was crying. Once he left the bedroom I began crying more and you called shortly after.  Felt a little better after talking with you, but still felt bad.

The following monday...Today was really difficult. I think you really trigged how alone, unheard and misunderstood I felt. I'm feeling panicy right now and starting to cry.  I'm in your parking lot and there was a mother yelling at her little boy.  Then, there was a little girl crying and screaming...feels like I really need to do that, but it really made me anxious.

This week, it seems like I've remember living at Grandma and Grandpa's when I really haven't before.  Let alone talk about it.  Really feels like I need to talk, cry, scream and hit.  I really want to hit me or the glass...Everything just hurts and I keep flashing back to Grandma and Grandpa's, the duplex and Maye and Bill's [ex-step-father's parents].

Then, I think that it is my fault because I went and looked at the houses Monday...I just have to make everything bad.  I just want to curl up and die.  Guess I'm saying that I'm in a lot of pain.  Crying a little more now.

[I really don't know what was going on with this entry, but obviously there was some sort of thing going on with me with my therapist. I did read this to him and I know that he took responsibility for his part. By the time, I left I was relieved and felt really reconnected to him. I want to encourage all of you to let your therapist know what you are thinking and feeling regaring the way that they speak to you, what they say or anything else. I know how difficult it is and contrary to what we actually want to do, but do it anyway. :-) After almost nineteen years, I still have to journal it then read it. But, it is some of the most productive work you will do. It will also increase your ability to trust yourself and someone else.]

Past Journal Entry: January 2006 ~ Therapist Conflict Part II

Past Journal Entry ~ 2006 ~ More flashbacks

Past Journal Entry ~ January 19, 2006 ~ 5:30 PM

Gary,

I had a tough time last night.  I was actually still crying when we got off the telephone, but the medicatons were kicking in and I fell asleep, but woke up on and off between 2-4:30, then I was awake.

I've been feeling really bad about last night because I misinterpreted what was going on.  Then I became anxious because I kept thinking you are angry with me. I've been tearful and going away much of the day. I've really been wanting to cut put my hand through glass and stab my leg.

Last night, was really difficult as I kept remembering more of what it was like and how I felt when we lived with Grandma and Grandpa's.  When I thought that you weren't with me...I felt really bad...after what you said last night. I wonder if it was difficult for you to remain present last night.

When I though you weren't paying attention or listening to me.  I felt really bad and was angry.  Feeling like I was wasting my time and again there was no one to listen, felt really alone and I was in the middle of struggling to tell you about my mother slapping and hitting me and how I was terrified...I was also trying to get it out of my head because I didn't want to believe it. Always thought that I was older.

[I really don't know what was going on with this entry, but obviously there was some sort of thing going on with me with my therapist.  I did read this to him and I know that he took responsibility for his part.  By the time, I left I was relieved and felt really reconnected to him.  I want to encourage all of you to let your therapist know what you are thinking and feeling regaring the way that they speak to you, what they say or anything else. I know how difficult it is and contrary to what we actually want to do, but do it anyway. :-)  After almost nineteen years, I still have to journal it then read it.  But, it is some of the most productive work you will do.  It will also increase your ability to trust yourself and someone else.]

Past Journal Entry ~ January 19, 2006 ~ 5:30 PM...continued tomorrow