Karen L. Syed's Blog, page 5

The Loss of a Friend

I came to the Garbriel House of Care on December 30, 2013 a couple weeks after my surgery at Mayo Clinic. I wasn’t too sure about Gabriel House. Community living, no food or TV in the rooms, and lots of people all around. I was convinced it would cramp my style.

I’ve been here more than a month now and I can’t tell you how wrong I was. This place is a gift from God. I can’t imagine what the healing process would have been like if we’d had to spend three months in a hotel. But the best part of this place is the people. Every other person at Gabriel House is a patient. The others are their caregivers. If you know somene who is taking care of a sick loved one, you be extra special kind to them. They have the worst job ever and their only pay is love.

I have met some wonderful people who have really touched my life. Today, three of them left. Two went home and I am so pleased for them. Even though I will miss them, I am confident our friendships will endure. I miss you already Catherine and Sue.

But we also suffered a loss today. Several weeks ago, a couple blew into the house with more energy and enthusiasm than should be legal. In their 70s they were more vibrant than most of the rest of them. Joel in particular was a feisty one. Always quick with a joke or a compliment, and always flirting with all the girls. An absolute gem.

Well, Joel was here to fight back his cancer. We all thought he was doing great, but a couple of days ago, they discovered things things weren’t that good. Joel passed away this morning, and I can tell you, we are all feeling the loss. You don’t imagine that you can care about someone after such a short amount of time. But Joel was a breath of fresh air and that is one light in my life I don’t think will go out any time soon. RIP Joel, you are already missed.

Cherish the friends you have, they don’t live forever.

Mother Issues

Dear Mom.

I thought I was okay with you going, but it seems that I am not. I was recently told that I have mother issues. This is not news to me or anyone, but I did not realize just how angry I am with you. Where the hell are you? Why aren’t you here? I dealt with being the adult in our relationship. It had to be done and I loved you, so I took care of you. People keep telling me that I need to forgive you and move on with my life.

I did all the things you needed me to do. I cooked, I cleaned, I wrote checks to pay bills so all you had to do was sign them. I did it because you were my mother and I loved you. I took the few beatings you gave me in stride, never sure I deserved them, but they seemed to make you feel better.

For all my life I tried to be what you wanted me to be. I know you wanted a girl you could dress up in ribbons and frills, and I wanted to be a boy. So to make you happy and proud of me I took ballet and tap and learned to twirl a baton. But where were you when I was showing what I’d learned? WHERE WERE YOU? I wanted you to be proud, but you never seemed interested.

Later in life when things got harder for you, I tried to take care of you, I almost lost my marriage because we wanted to take care of you, but you made it impossible. You did everything in your power to push us and everyone else away. Why? We just wanted to help, because we loved you.

And then one day you came to me and asked, “Tell me what to do. Should I just give up and let nature take me?” Who the hell asks their kid to make that decision for them? What the hell were you thinking? Nothing could have been worse for me. I could not even imagine making that choice. But I loved you, so I told you to decide on your own and I would support your decision. And I did.

But now I NEED you. I need my mother to be here for me like I was there for her. I need to know that when the pain becomes unbearable I can hold her hand. I NEED to know that when I wake up in the middle of the night crying out for my mother that she will wipe my face and tell me she loves me. I NEED MY MOTHER. But where are you? Why aren’t you here? Why did you leave me and how in the hell can anyone expect me to forgive you for not being here when I need you the most? I want to forgive you, I swear I do, but you left me and now I have no mother to make everything better. How do I forgive you for not being here when I NEED YOU?

Is this year over yet?

Well, this has been a hell of a seven days. Last Thursday I had to go to the oral surgeon and have three teeth pulled. It wasn’t nearly as bad as I thought it would be. The surgeon and his team were awesome, from start to finish. If you are in Orlando and need oral surgery I highly recommend Dr. Scott Farber. They did everything in their power to put hubby and I at ease and when I went in I actually had no anxiety about it. Of course now that the work is done, this shit hurts. No pain pills because of the heart stuff, so I am in a lot of pain. So now I am bruised and suffereing.

Then yesterday I went to get my hair cut. I decided that I needed to hve it short for the surgery and recovery since I am going to have trouble maintaining it. Those of you who know me, know how long it took to get my hair long and the troubles I had keeping up with it. I am not going to be able to do that for a while, so I went short. Now, this may sound silly, but other than some breakdowns here and there, I have been okay about the surgery. So I am sitting in the chair yesterday and the little gal pulls myhair up in the rubberband and starts to snip. I teared up, got short of breath, and thought I might slip into a full blown anxiety attack. It was the first time I realized just how much I am giving up to get this LVAD and what it is going to mean. It scared the hell out of me. I managed to simmer down, but it was weird.

So then yesterday I had to tell my friend that I could not go see Andrea Boccelli with her. She got wonderful seats and was taking me to cheer me up. I can’t tell you how much I was looking forward to it. I was going to see Boccelli for free. Well, because of the teeth and germs, infections, blah blah blah I am not able to go. I won’t get to see them (Tami, her sweet boy Austin, and Michael who just came home from Japan as a newly promoted Corporal.) This was a once in a lifetime opportunity and this damn heart has taken it away from me. It infuriates me, and makes me too sad.

But, such is life and I will man up and get over it. But it sucks and now I am crying again, so I will close. Not looking for any sympathy here, just needed to vent.

Strong Spirits by Alice Duncan (Review)

Click Cover to Buy

I truly enjoyed this book. I adore Daisy Gumm and the secondary cast of characters is delightful. While the time period is one of my favorites, and I love mysteries, I am having a hard time figuring out where it belongs. There is a bit of a mystery but it takes a back seat to the other goings on. the story had good pacing, the characters came to life easily for me, but I seem to have missed the climax of the book. All questions are answered, but left the mystery element lacking.

I will read more of these books as I enjoy Alice Duncan’s style and voice, but I won’t expect as much in the mystery department.

Worth the read if you enjoy reading.

Digital Photo Restoration by Deborah Collin (Review)

Digital Photo Restoration: What to Do and How to Do It by Deborah Collin

My rating: 5 of 5 stars

Another excellent resource from Deborah Collin. This time, she is giving us the inside scoop on how to deal with photos and images when working on genealogy or any other projects. One of the biggest problems I have run across is figuring out how to restore old images that I have rescued from some evil box. In the past, I have tinkered, but could never quite figure out exactly how to make the outcome worth all the time I had invested in the image.

Ms. Collin gives solid and practical instructions on exactly what to do. I do not follow instructions well, but hers were clear enough that I actually understood them. Her insight into various graphic programs is excellent. I have learned of several new programs that just might save me from more gray hair.

As usual, Deborah Collin has written a book that is good enough to be worthwhile and still simple enoough for anyone to use. I especially like a writer who doesn’t feel the need to talk down to readers. I always feel like she is talking “to me” as she explains things and that makes learning easier.

View all my reviews

It Still Sucks

As you may have guessed from the subject, this might not be a sunshine and puppies post, unless of course…oh never mind. This has been a hell of a week and it isn’t even over yet. Couple of anxiety attacks and today I ruined our day with a full-blown whimpering, sobbing tantrum about how unfair life is. Yeah, I know suck it up.

I have spent the last week on the phone trying to get things squared around with prescriptions, doctor appointments, did I mention anxiety attacks? Then there is the crap with the insurance…one ends on 12/31/13 but I already have another in place. We had to jump through a bunch of hoops to try and get today’s appointment covered by something. Why can’t things ever be easy? And let me just say…half a million dollars. Yeah, you read that right. That is what it will cost me to get my two surgeries and that is before my prescriptions that will run about $5000 per month (that is post transplant). The LVAD meds should only be about $2000 a month. Oh, and did I mention insurance only pays 80%. Where the hell are we gonna get the rest of that money? I feel more tears coming on…but I shall refrain for now.  I freaking need fried chicken.

So I sit here with my heart monitor on and the leads with little adhesive pads burning holes in my flesh. In 24 hours I will hurt like the devil because there are no alternatives. Allergic to adhesive…really? sigh I also went and had my biopsy sutures removed. Hurt worse getting them out than getting them in. I did see a new doc today and I liked her a lot. Very upbeat and my short time with her has been the bright spot in my week. Tomorrow we trek back downtown at rush hour to drop off the monitor.

Oh, and they took me to transplant committee today. REJECTED. I knew it would happen, they warned me, and I thought I was prepared, but it still sucks to be told you are so sick that you need a new heart to stay alive and then being told they won’t give you the new heart because you are too sick. I know we have a back up plan and they will revisit the committee after we try plan b to get us ready for the original plan, but damn, it still stung to hear it.

I can’t seem to get out of the “what did I do to deserve this” pity lane. NO ONE deserves this, but right now this is all about me and my self-pity. And now my personal favorite asshat comment for the day. “It’s my new heart, not someone else’s old heart.” Dick Cheney

Really? What an insensitive prick. Fine it is your new heart, but how do you think the family of your donor or any donor feels about that? You can think as stupid as you want, but for the love of all things deep fried, don’t talk!! Just don’t  talk, Dick.

Small obstacle, my arse!

Well, I am home from my first week in hell. To say I am exhausted would be a gross understatement. I underwent so many tests I cannot even remember them all. I do know there was lots of poking involved and that just sucks. We have run into a small obstacle.

What they were able to find out is that I am considebrably sicker than they thought I was. After everything, we have determined I have a longer journey than expected.

I go to committee on Thursday. This means all the people who saw, and talked to, and poked me, will get together with the folks who decide whether or not I can go on the list. Chances are I will be rejected. I know, right. After everything I have been through. How can they do this to me?

Click image to view larger.

At first I was horrified, but they explained that my pressures are too high and right now they could not put a heart in because my body would just ruin it again. I had no idea I was that sick. Too sick. So I will wait to find out if and when they will put in the LVAD. Once I get that, we will work to get my pressures down and then when they are down, I will go before the committee again to get approved.

It may be as soon as before the end of the year that the device goes in, but they assure me I will feel better once I have it. I met a couple folks who have the LVADs and I am not as freaked out as I was in the beginning. I am determined not to waste a heart.

It was weird, yesterday they doctor was talking to me about my condition and everything, and he touched on me being a writer and a publisher and he suggested I consider writing a book about my journey. He says that so many others could benefit from my experiences, the highs and lows, and everything.

Any thoughts on my doing this? I am by no means the only one going through this, but he says, not everyone can write it. I’d really like to know what you guys think. Ya’ll are my support system, even if we have never met. I rely on your positive notes and so forth, because I am sure as hell having a hard finding them on my own.

Tagged: heart failure, heart transplant, Jacksonville, LVAD, Mayo Clinic

Tracing Your European Roots

Tracing Your European Roots

By W. Daniel Quillen

I just finished reading this book and I can’t tell you how much it is going to help me. I have just begun researching my German ancestors and I was quite afraid of how I was going to figure it all out. W. Daniel Quillen’s book gave me exactly what I needed to get the ball rolling.I have read several of his other books on genealogy and as was the case with them, I found a wealth of solid usable information with enough humor and interesting facts about his family to keep me from getting bored.

One thing I have discovered about Mr. Quillen’s books is that once you’ve read one, you find all kinds of reasons to read the others. I have almost the entire set now and I refer back to them frequently when I need a refresher or a tip. ANother great thing about this series of books is that Quillen uses his actual experiences and results to make points and clarify sticky issues.

Tracing your Eurpoean Roots is an excellent guide for stepping out of the comfort zone (once again) and searching out those relatives from far off places.

Genealogy expert W. Daniel Quillen offers valuable tools and resources for anyone tracing their European ancestors.

The United States is largely a nation populated by people of European roots, and many do-it-yourself genealogists find themselves in need of scouring European records to find their ancestors. New to this edition is a section on tracing your Scottish ancestors. This volume of Quillen’s Essentials of Genealogy shows readers how to do their own research to uncover their European ancestry. This book will cover the following topics: · Where to find European records · How to access European records · How to use the Internet to help you in your search · Pitfalls and issues in obtaining European records · Research tips for England, Ireland, Germany, France, Italy, Spain, Poland, and other European nations.

It’s My Party

and I’ll cry if I want to!

What now?

Well, I made the trip to the Mayo Clinic in Jacksonville. First, what an awesome facility. Everyone was extremely nice and so many smiles. Rare for a place filled with sick people.

Second, sigh. To say I am in a serious state of depression would be an understatement. I know I went there to find out if I could get on the heart transplant list, but I guess deep inside I was hoping they would say I was just a fat hypochondriac and send me home with a diet that would fix everything. It would appear that things in my own little world don’t always turn out the way I think they should.

The doctor was extremely nice and talked to me until I understood everything. While I do understand everything, it was overwhelming for hubby and me.

The doctor made a point of saying “I’m thankful you self-referred yourself when the doctors didn’t act fast enough, but I wish I had met you six months ago.”

Boom! First bombshell.

He explained about the stages and even drew pictures for me. He was kind of enough to remind me that my heart is “HUGE. I mean huge!” The average heart is the size of a fist. My heart is more than 3 fists. But I knew it was enlarged, so no surprise there. But then he said, “The life expectancy for someone in your condition with this heart is two years.”

Whap! That one knocked me breathless. My heart broke when I heard my husband gasp behind me.

So then we talked about options.

1. Medicine. Not hopeful because that is what we have been doing for last five years with no success.
2. LVAD. If you don’t know what this is, visit this link. http://en.wikipedia.org/wiki/Ventricular_assist_device
3. Heart transplant.

Obviously the transplant is the lesser of the evils, but there is still so much to do before I know if I even qualify.

Then the doctor said, “If you had waited any longer for one of your other doctors to refer you, it would probably be too late. I think we have you here in time.”

Kapow! So having two sets of doctors did me how much good?

Don’t get me wrong, I like all my doctors. They have helped me tremendously, but shouldn’t they have known to send me? What exactly were they waited for? They all asked if I was on the list, but none sent me. A little bit of anger there, but I’ll get over it.

The doctor went on to explain that there are certain protocols in place that are to be met before a person is even evaluated. But he feels I am too far advanced with heart damage to wait and has approved an expedited evaluation to get me on the list sooner. He says I am a great candidate, but still need to go through the evaluation, but quickly. They are setting up my appointments as we speak and he wants me on the list within a couple months.

Once I get the transplant it will mean at least 2 months in Jacksonville living while I go through rehab and all my follow up appointments. This is fine because I have great relatives there.

I am not sure this has all sunk in yet, I just keep thinking that I can’t do this; it’s too much; I’m not strong enough. Hubby is trying to be strong, but he looks at me differently today. I wish he didn’t have to go through all this, I know he didn’t sign up for any of my excess baggage, but I thank God he is with me, because if I can do this, it will only be with him holding my hand. I have no strength without him at this point.

I know I need a positive attitude and I will get around to it, I’m sure, but right now I just want to curl up in a ball and cry until it all goes away.

The Queen of Backsliding

I just read a blog post by author Katina French on her embarrassing medical conditions. She points out that October is Mental Illness Awareness month. Boy howdy.

**Clarification: A presidential decree actually declared May as National Mental Health  Awareness Month, 2013.

 In 1990, the U.S. Congress established the first full week of October as Mental Illness  Awareness Week (MIAW) in recognition of NAMI’s efforts to raise mental illness awareness. Since then, mental health advocates across the country have joined with others in their communities to sponsor activities, large or small, for public education about mental illness. 

Mental Illness Awareness Week, Oct. 6-12, 2013. MIAW coincides with the National Day of Prayer for Mental Illness Recovery and Understanding (Oct. 8) and National Depression Screening Day (Oct. 10.)**

She claims to be the queen, but how can that be true, given my medical history. From what I’ve seen, Kat is a delightful woman and she does camoflauge her issues pretty well. I know how she feels. Having dealt with depression and anxiety for as long as I can remember, I can totally get where she is coming from.

I also feel for her with regard to the digestive system, and I trump her husband’s diabetes with my own diabetes. Toss in my heart condition and the dreaded allergies that Kat fears, and I am obviously the queen. But I will give her that title in her kingdom and take the title for my own kingdom. In the land of Backsliding, we thrive on failed quests and goals. We set new goals with extreme glee and then we suffer in excrutiating emotional pain when we fall off the wagon.

In my case, I not only fell off the wagon, but I ate it. When I first got sick I weighed 309 lbs (I looked like someone stuck an air hose up my arse at full force). It was horrifically uncomfortable. I managed to get down to 206 pounds over the course of 5 years and that was pure bliss. I could not remember the time when I felt better. But alas, the land of Backsliding is a dangerous place and there are many demons to be vanquished. Unfortunately, I just ate one of them too.

In the last month or so I have gained almost 20 pounds and I don’t know how to make it stop. I mean, I know what I have to do, I just can’t seem to get over the emotionally instability that causes me to ignore the obvious. I do sincerely want to lose weight. I promise I do. I just can’t stop eating. I get upset, I eat. I get scared, I eat. I get happy, I eat. The happy eating is the only eating I really enjoy. The others are just a defense against the horrible feelings whirling inside of me.

I recently had several people tell me how inspired they are by me and my strength. Thank you, but I am not strong. I am actually quite weak and nuerotic. I have fears and insecurities like everyone else and while this post may seem whiny and pathetic, it is actually intended to let you know that I am going to kick all this crap to the curb. I just needed to vent.

And while you’re here, I would like to remind you to show mercy and tolerance when people aren’t just like you. We aren’t all crazy, we’re just different.