Sunday, April 22, 2012
Ok, back to my journey with CIDP. I spent 3 horrifying weeks in hospital “B” and from there they sent me to rehab at Tampa General Hospital. I could not stand, let alone walk. I could just barley roll over in bed and couldn’t raise my arms high enough to feed myself when I got to rehab, but they said I’d be walking by the time I left so I was optimistic…what a letdown that was. Not because they did anything wrong, per say, but things could have been handled differently.
By then end of week 1 I was sitting up and dressing and feeding myself. I was exhausted afterwards and needed to take another nap but that’s normal, or so I’m told. I had an hour of occupational therapy (OT) first then an hour of physical therapy (PT) then lunch then more PT then the rest of the day was “free time”. I was visited by the psychology department and they have a “recreational therapy team” that also visits patients and tries to get them to hang out with other patients and “have fun”. What they really needed was someone to sit and talk to the patients, not analyze them, not try to make them outgoing when they just aren’t that kind of person to begin with, someone who the patient can feel comfortable talking to that’s not a friend or family member.As you know from previous posts I love my family and friends dearly, but I really needed someone to talk to that wouldn’t document everything I said and would just let me vent. When your life is turned upside down and you are completely dependent on strangers, or even on someone you know, it’s scary, frustrating and depressing and so many other words I can’t even begin to say and you need someone that doesn’t say “you’re depressed, take this pill” I told them I wasn’t depressed I was MAD. I was mad at God and decided he hated me, why else would all this happen? I just couldn’t fathom why else this had happened to me. I was a good kid, ok I was 30 but still, I was working full time, paying my bills, not cheating on my taxes, not doing drugs. Ok I wasn’t going to church either but I’ve always believed that God is everywhere not just in church. I can still be Christian without attending mass. But anyway, that’s a whole other issue and a hot button for nearly everyone so I won’t go on about my personal beliefs.
By week 2 they were having me roll myself down to therapy then do both OT & PT then roll myself back up to my room for lunch then roll back for afternoon session then roll back to my room for dinner. HELLO! What’s my diagnosis? GBS (at the time they still said GBS not CIDP) What is one of the major symptoms? FATIGUE! The idiots, by the time I rolled myself the 200 feet to the elevator to go down to therapy I was exhausted. I had fed myself, brushed my long hair and pulled it into a ponytail, brushed my teeth, gotten dressed then roll a wheelchair 200 feet to the elevator then I needed to roll another 150 feet to therapy then do therapy. What the hell were they thinking? Finally I convinced them that it was too much on me and they had someone come get me and take me back so that I wasn’t too tired out.During week 2 the psychologist threatened to have me committed, because I told him to…well, nicely to piss off. He decided that all my problems were my dad’s fault and he filed a report saying that he would not release me to go home with my dad because I wouldn’t be safe! I don’t know how he came to that conclusion. I know one day when he stopped to see me I was upset. He asked why and I said because I was disappointing my dad, I knew I wasn’t, I was sick and dad loves me no matter what. I was disappointing myself really but apparently dads are a hot button for that doctor. My brother told me he was obviously an idiot because people are only psychologist because they couldn’t be a psychiatrist, that a psychologist is a glorified guidance counselor, he had a point.
So after the stress of that I began another relapse and started to get weaker again. By week 3 I had to receive IVIG again and by the end of it I was feeling a little better and the social worker said I had to go to a nursing home because I wasn’t getting any better. Again, I freaked out. In my mind nursing homes is where you send someone to die. My grandmother had died the year earlier in a nursing home and she went there to die because no one could take care of her. I felt like that wretched woman (social worker) and the psychologist were sending me off to die. I was 30 years old! I had just begun to live, now someone was sending me away to die! I cried and cried and mom just held me and rocked me like she did when I was a little girl. She told me everything was going to be ok and they would take care of me and they would not let me die. The next day they brought me home…wheelchair and all.So, this memory is making me cry, again, so I’m off to blow my nose and wash my face. Just know that I have gotten SO MUCH BETTER and I no longer think God hates me. Till next time, keep believing in the magic of life.
On a side note, about a month later someone form an “independent survey company” called to do a survey on my stay in rehab. Oh boy did I have fun! I told them the nursing staff was awesome and specifically named two of the nurses that had helped me beyond what I thought their job description called for. But I also let them know exactly what I thought of the psychologist and what he had pulled. The girl doing the survey was horrified and I found out that that psychologist was fired about two weeks after the survey had been done. I HOPE that I had something to do with that!I saw one of my nurses about two months later and she said that several people had complained in a survey about that “Dr” and he was gone. I told her what went on with me and she said she had heard he had his own “daddy issues” that they hadn’t spoken in 20 years. So maybe all those years in college didn’t teach him how to deal with his own issues and they were his down fall.
See, I told ya, life is magical J
Monday, April 16, 2012
Now on to my 3 besties, Crystal, Laura & Maribel. Each one of them has a special place in my heart. I would be lost without any of the three of them no matter how little I may see or talk to them with their busy schedules. I love them equally (no fightin’ girls) but I’ve known Crystal longer so she is first up on the block.
I met Crystal (AKA Sunshine) in the spring/summer of 2001. She was this bubbly vibrant ray of sunshine in an otherwise cloudy pool of employee prospects. She wasn’t even looking for a job at the time, she came in to the store I managed looking for something I was out of stock on at the time, it took me a few months to convince her she wanted to work for me. We became close friends fast and stayed close way beyond either of us working for that wretched company. She was the best dang employee I had, ever, and she made work fun. We use to pick on this one other girl who worked for me, we were the mean girls from high school, but the sad thing is that the other girl was too dumb to figure that out!
Ahh good times, but I’ve talked about how awesome Crystal is in a previous post so on to Laura (AKA Peach). Peach isn’t a nickname I gave her, she came to me with this one. I met Peach summer of 2003. She was my neighbor’s stepsister and I was introduced to her as “Peach” it wasn’t until about 6 months later I found out her name is Laura! But I don’t feel bad about that because she spelled my name WAY wrong Charrol instead of Cheryl, I guess she takes hooked on phonics to the extreme, but hey if it isn’t in spell check I can’t spell it either.
Before I admitted that there was anything wrong with me Laura was there watching and worrying just like the rest of my family. I’ve said before how she was there when I went into surgery and when I came out. But I haven’t said how she came to visit me in rehab and took me outside & sat with me just so I could breathe some non hospital air. She brought me sushi from our favorite restaurant and best of all, this made my roommates jealous, she gave me a facial while I was in rehab. For anyone who hasn’t experienced the horrors of extended hospitalization, let me tell ya, I felt almost human again after that. True friend, love her.
Now Maribel (AKA twin) I met Maribel through Peach, they go to the same church. I call her twin because we are extremely different but so much alike. When I met my twin I was just barely walking with a walker and Peach convinced me to go bowling with her church group. I figured what the heck, I can hardly walk but I can sit & watch just to get out of the house. Maribel was cool, very nice girl but I really didn’t feel good so it wasn’t till a few years later that we got to know each other but now it’s like I’ve found the other half of me, and I’m FABULOUS! She has taught me basic crochet. I was working on a blanket for myself but I have a short attention span and got bored with it so she finished it. It is huge & beautiful. It’s my blankie of many colors, like Dolly Parton’s song coat of many colors. It’s about 15 different skeins of yarn in various colors because I wanted a bright, cheery blanket for my bed because I spend so much time in it with IVIG infusions. So now when I feel yuck & have to lay down I look at it and know that someone loves me enough to finish my huge crochet project for me just because she cares about me.
I’ve had good friends all my life but these three women are part of my family. I’ll post some adventures with them from time to time as something makes me think of them. Until then keep thinking of the little things that make you happy because when you forget the little things, you forget the big things.
Believe in the magic of life.
Thursday, April 12, 2012
I have SO MANY pictures of him, this one is one of my favorites.
This was an IVIG week so I've fallen behind on my posts & caatching up with everyone on facebook. I get 4 days every 3 weeks but I seem to be doing well so far. Last week I talked about my family. This week it’s my dog. It should be my friends but I just have to rave like a lunatic about him. He is the light of my life and as I write this he is sitting in HIS chair watching me. He is a mama's boy & we suffer from seperation anxiety some days today he is just in cuddle mode.
His legal name is Sirius Black, yes I’m a Potter geek. I was reading the series when I got sick and I was on book 4 when I got him. When I read book 3 and Sirius asks Harry to live with him I felt like Harry finally saw hope in his future for the first time in his life and when I was reading that book I didn’t see any hope in my future. The light at the end of the tunnel everyone kept talking about was a train! I was at my lowest point in my CIDP ordeal and it was not pretty. So reading that book and seeing that Harry had hope made me feel better for him. I’m an avid reader, I don’t just read books, I absorb them. They become part of me if they are really good and I loved the HP series. (For the 5 people in the universe that don’t know, Sirius Black was Harry Potter’s God-father, I don’t feel like I just spoiled that for you because, come on, the books have been out over 10 years if you were going to read them you should have done it by now!)
I won’t give any details on how I acquired Sirius cause that’s scheduled for a much later post. I've got to keep people interested and I have a flare for the dramatic! Maybe I’ve just watched The Young and the Restless for too many yearsJ
Like most of my family members Sirius has several names. He has been called monster, brat, baby, mom and who knows how many others. Mostly I call him baby or pigwatt. He is 6 now, when I got him he was about 7 weeks. He is a terrier mix, looks like a shrunken German Sheppard. We have had dogs and cats all my life but he is the first little dog.
He likes everyone, he’s never met a “stranger” they are all his long lost friends. We go to lowes, petsmart & his favorite (and mine) starbucks. He gets a tiny cup of whipped cream & a bowl of water. I take him about once a month & he just sits & people watches. I want to get him involved in project P.U.P. (pets uplifting people) but he has no formal training. He doesn’t “sit” when I tell him. He doesn’t “stay” real well but he is really good around wheelchairs, walkers & canes because I use them from time to time. When I got him I wasn’t walking so he sat on my lap in the wheelchair. Then as I started walking he stayed out of the way of the walker & cane without being “told”. I had thought I’d be that crazy lady that gets her dog a stroller. Here’s my reasoning, my balance sucks so I have to have mom hold his leash when we go places. But if I had a stroller he could ride and I could push it and it would help me keep my balance. That way he doesn’t even have the chance of knocking someone over & if he gets tired he can sleep.
He has learned what bath means and gives us dirty looks or leaves the room every time it’s said. So now we either spell it or say “shower”. If I make a strange noise at night when I’m sleeping, (apparently I was snoring weird one night) he goes to get my mom. He runs to mom & dad’s room and jumps up and hits her side of the bed and wakes her up then runs back to my room. If she doesn’t get up he repeats the process till she does. It’s another thing he does without being trained to do it. He was about a year when we noticed it; I don’t know how long he had been doing it. He is so funny, one night I dropped my laptop and he came running into my room and looked at me like “Are you ok? I heard a crash, are you hurt? Do you need the blonde one?” (We call mom the blonde one) I looked at him and said “I’m ok, I’m ok. Don’t wake anyone up, I’m fine.” He jumped up on my bed and made a threat assessment (sniffed me all over then checked my breath, something he does every morning for some reason, I’d really like to know why.) & settled down in the chair by my bed for the night. He’s just weird, and frankly I know I AM TOO!
He will wake me up in the middle of the night just to cuddle. I’d get pissed but, he’s a dog, he doesn’t understand mama is sleeping, just that he wants a hug. Like I’m sure I did as a baby. AND finally, just like everyone else he LOVES my brother, when Mike comes over he gets over excited and has an asthma attack! He does the same thing with my friend Maribel.
Well that’s all for NOW about my baby. Yes, when I look obsession in the face I say “don’t I know you?”
Good night my friends & always believe in the magic of life.
Sunday, April 1, 2012
I was polishing my nails earlier (pretty sparkly blueJ) and it got me thinking about all the little things we take for granted, i.e. polishing your nails, brushing your hair or teeth, um, how to put this delicately…cleaning yourself after relieving yourself, you get my point. All things we do without thinking about it. It’s like breating and I wanted to write about my experiences with things like that but if I put those things first I wouldn’t mention my family & friends. Not that I take them for granted (I don’t think) but for me they are natural, just like breathing. So in part 1 of this blog I’m going to focus on my family.
I was born in northern New York, a teeny tiny town in the middle of the Adirondack Mountains. I had to ride my bike 3 miles up the road to see my BFF Suzie to find someone to play with other than my brother. He was a teen by the time I was old enough to ride that far alone, before that I played with him & the neighbor boy that was mean to me, so I was happy when I turned 7. (Before you think OMG she rode her bike 3 miles by herself at 7! It was the summer of 1982 so I was 7 & ½ and on the way there I passed 7 houses and of those 7 I was related to 5 of them. And times were safer back then, the biggest worry was bears. )
I have just one brother, Michael, whom I refer to as many different titles, and mom and dad, that’s it. I had awesome grandparents and several Aunts and Uncles and cousins but we moved to Florida when I was 9 so they weren’t a big part of my life after that.
I can’t say that I thought all families were like mine, but I did think all families loved each other like mine did. Till I spent the night with my friend Mary when I was 8, let’s just say if what happened that night happened now, child services would intervene, I hope.
So when we moved to Florida we were in a more populated area and I had kids my age right down the street. Chrissy, Kathy & Kelly. Kelly’s family was like mine. Mom & dad still married, went to church every Sunday, had family dinners, said please & thank you & I love you. Kathy’s mom and dad divorced about 3 years after we moved here and it was nasty, they wanted to drag all us girls into it. It continued into our teen years. But before the divorce they went to church every Sunday, (which may have been the problem, that’s where her mom met the man she had an affair with). They had Sunday dinners, but didn’t say please, thank you or I love you to each other. Chrissy’s family was WAY different than mine. Mom & step-dad (real dad had been killed in-front of her when she was 3) and she had 2 half brothers and 1 step-brother. They didn’t g to church, didn’t have family dinners ever, they never said please or thank you or I love you to anyone. Chrissy’s mom would slap her in the mouth when she got mad at her, and she had braces, even if you don’t have braces, you don’t do that. It’s one thing to give a light “pop” just to get the kids attention if they say something nasty, but her mom didn’t just tap her, she drew blood.
There was so many things different with my friends’ families as I grew up and made new friends through school. I’d say wrong but they may just have been different. No family was like mine and I realized early just how lucky I was to have the one I did. Don’t get me wrong, we had our trouble like everyone else but at the end of the day we forgave and said “I love you”. My parents have always been supportive of the things Mike & I did, well as long as we weren’t hanging ourselves from the swing set or swinging from the lamp. Yes, Mike hung himself from the swing set by his ankle, I don’t know why…he’s a boy is all I can think of and we swung from the lamp and broke it, then lied about it, got a spanking and learned not to lie to mom & dad, something we still abide by. If mom and dad thought what we were going to do was a mistake they let us know what they thought, but if we weren’t going to get hurt ourselves or someone else they let us do it and we learned our lessons or proved them wrong, whichever the case was. The world didn’t end and we got stronger and that may have made us more understanding. I’ve made my share of mistakes but I survived them and my family still loves me. So it amazes me when others say their parents aren’t supportive of them with their illness.
My dad is a man of few words. We know exactly what he is thinking by the look in his eyes, he doesn’t need to say anything. But if physical work needs to be done he does it and doesn’t ask for money for anything, not even materials. When I got sick and we found out that I would be in a wheelchair when I came home, he built a ramp and fitted the house to make it safe for me. The chair was too wide for my old bedroom so he and mom gave me theirs and moved their things into my old one and never complained.
I was about 3 maybe 4 and we (me, bro & 3 cousins) were playing on the picnic table at Grandma’s, there was a sheet of plywood on the top to make it big enough for us all, and all the other kids had gotten down and I was last kid standing. No one would help me get down, so I tilted it and slid down while still standing. I didn’t have any shoes on! I had slivers covering the bottoms of my feet, it hurt so bad. Michael carried me into the house and told mom, Gramma & Gramp what happened. He put me down in Gramp’s chair and they all tried to get me to let them get the slivers out, but I wouldn’t let anyone touch them till my dad got home from work which was going to be hours. Mom said I sat quietly with tears running down my face but not a sound came from me. I wanted dad. Dad was my sliver picker, he never hurt pulling them out. In a kid’s mind I guess it’s better to wait hours in pain than to have more pain for a few minutes.
My mom, there isn’t enough words in any language. My mom is the definition of the word mother. No one else’s mom can compare to her. She has sacrificed so much for me I cannot even begin to list them. When I was in physical therapy she drove me and stayed there and encouraged me through the pain and frustration. My therapist said one day how great she was and we looked at her like she was speaking a foreign language. To us that’s what you do for family. Live, die, fight, pray, love that’s just what you do. She came to the hospital pretty much every day. There was some days she couldn't make it because of a client coming in (she is a semi-retired hairdresser, her salon is an addition on to the house) some days if the weather was bad I'd call her and tell her to stay home. I didn't want her driving in the rain. She would argue with nurses and doctors when needed for me. She was my patient advocate. But she has been great all my life. She fought with the school when I was in trouble for whatever and get me out of it if it wasn't my fault. If it was something I did well, I suffered the punishment there and at home. My dean was afraid of her, by the end of senior year they all were.
Now, my brother… In my eyes he is perfect, in reality I know he isn’t. When I was first learning to talk I called him “big bra” and he could get me to stop crying when even mom couldn’t. As we got older I just really looked up to him. We are Catholic, the first day he was an Altar boy I cried. Mom said she looked down at me and I had tears running and she asked me what was wrong and I just said “I’m so proud” I was about 4. So now our running joke is he is my god. So if I ever mention god with a little “g” that’s him. I also refer to him as “St. Michael” because with my Aunt Ethel he could do no wrong. I was the bad seed AND all my friends have the hots for him so that annoys me. When I say all, I mean ALL, even the ones that haven’t met him. Ok so I only have 3 friends left but still, eesh.
He always protected me growing up. He’s 4 ½ years older. When I got sick he paid my car payment & insurance till I got disability and could pay it. He bought me a laptop so that I could use it when I was in the hospital, I was there about every 3 weeks at the time. With his job he couldn’t come see me as much as he wanted so he wanted to do something nice for me. One day one of my friends said she was jealous of the relationship he & I have. She said she hadn’t talked to her brother in 6 months and that was just about their mom. I said to me that was just weird, it would be like not talking to myself for 6 months (I do that frequently. I argue with myself too, that way I ALWAYS win.) Since then the two of them have become close so I inspired someone! Yea me!
So, the moral to my lengthy post, never forget the people that love you. Never miss an opportunity to say “I love you”. Never take for granted that they will be there tomorrow, you never know what tomorrow will bring. Just because you aren’t blood related to a person doesn’t mean you aren’t family. If you love them & they love you, no matter what, they are your family. Blood doesn’t make family, love does.
While I may have a crappy disease I have the best family.
I am blessed