Monday, April 20, 2009

Well tomorrow is the big stress test which is frankly stressing me out!!! I am so out of shape and have no time logged on the treadmill in a long time. I have been having a lot of palpatations so I have to suck it up and get this done. I hope I don't pass out....how embarassing. I mean I almost fainted in J Crew yesterday and I was waiting to pay. Not exactly an aerobic challenge!
I have to trust my Dr. which is hard for me these days since they have no answers yet.
I amm off to collect my ever growing medical files today from my 2 trusted docs. I am off to the big appt. in NYC on Thursday...yeay!!!! This is the one appt. I am really looking forward to. I don't want to get to excited, but I can't help it. Answers, I just need some! Is that really asking too much. I think not!!
I love my home, but am spending way too much time here and way too much time alone. It is easy to become a bit of a hermit. If I don't call my friends they don't call me. I am not sure why, but that is where I am right now. I guess it's true happy people attract happy people. When you spend most of you time at home you attract no one. Out of sight out of mind. I wish people would reach out. I would and have when friends needed someone. No one even thought about ot this weekend when my husband was away. Thank god for family. I had company for dinner both nights. My therapist said I need to reach out more and keep the friendships going, but it feels awfully one-sided right now. Blah blah blah. This is what happens on a rainy day.
Must cheer up!!!!

Saturday, April 18, 2009

Well another crazy night!
I had such a nice day enjoying the sunshine and warm breeze. I had a good book and was hanging with my mom. I actually felt good. Even went for a walk!
I picked up some stuff at the grocery store and cooked a good,healthy meal and then bam! Palpatations!!!! Why...seriously...why! The day was the best in 2 1/2 months. Why did it have to end that way. Panic sets in. Do I need to go to the emergency room? Is this normal for me? Why do I have to be alone when this happens? Why won't it stop?
It was unsettling. I have never have it happen so many times in a short period of time. I called my brother who's opinion I really trust. He said not to worry it actually happens to him all the time. We taked for over an hour until I was as calm as I could be without my meds. I just hate that my beautiful day ended that way. I took my pill and managed to fall asleep an hour later.
I must mention my brother rocks. Pushes when he needs to and calm when he should be. I was a mess! Why?
I am going to try again today. That is ,let go the anxiety and head off to the beach. It is beautiful here and should not be wasted. The ER will be there if I need it later!
I just need to get to Tues. when I have my stress test. Once those results are in I can feel better. So next 10 days are...bloodwork, stress test, specalist in NY and finally the Gastro guy. In the middle of all this is weekly therapy! Thank god for her!!!! Some days it seems toooooo much. I need answers so I keep going. Thanks Mom and brother....thanks. I couldn't do this without you!!!!
I recently found out my neighbor has MS. I does put things in perspective. CFS.......MS. I feel lucky. Silly actually sometimes for complaining. Then I remember this is my life and I want to feel better and that's not too much to ask for. I will keep her in my prayers too!
Time to shower and pick myself up and move past the "poor me" feelings. Time to, as they say...
"suck it up". I am off to the beach to try and relax!!!

Thursday, April 16, 2009

OMG!!!! The sun is shining!!! Everything is better when the sun is shining :). Having said that I am in gastro hell. The lasest symptoms I have been told- IBS and GERD. Lucky me! So on top of everything else I have to watch what I eat. My cholesterol is a little high as well. When you don't feel good you you crave comfort food....need I say more! So now I am eating , oh I don't know, maybe 3-4 things. UGH!!!!
I was supposed to have bloodwork today, but we had a kitty emergency. He's ok now, but had eaten something he shouldn't have eaten. Bad kitty! I have to say I am not sad about the bloodwork. I have so many tests that having a day off is ok with me.
I am free of tests now for 4 days....woohoo!
Next week is my stress test and my new Dr's appt. Bring it on!!! I want answers. That actually may be the hardest part of all this so far. No one has answers. Will I feel better? Can I exercise more? What about supplements? Why do I feel different every day? Answers please! Hopefully next week I can get some!
Therapy has been a life saver. It is a must for anyone with CFS. Just being able to share all your frustrations and not be judged. You feel with anyone else like you are burdening them with complaints, but not there. We talk about evrything that is on my mind and she offers tools to get me through. She also will work with the Dr. in NY with anything she thinks will help. Love her!!
Ooh the stomach is growling...not much of a surprise. Time to try some food. Scary!

Tuesday, April 14, 2009

catching zzzzzzzzzzz's

Well another sleepless night. I am soooo tired all day, but can't sleep at night. It is a cruel joke! My chest tightens/heart pounds and my breath becomes short as my stomach burns with acid upset. The nights are tough. 7:00 am the road crew comes and starts to grind down the road for paving!!! Another good start to a day!
My litlle furballs are by my side as usual. They have a strange obsession with my laptop. They love it,touch it and want to sleep on it if possible :)
It's a rainy day in NJ and I have little desire to get out. I do have a hair appt later. I used to love going and catching up with the ladies. It now means smelling those horrible salon smells and enduring the hair wash at the always uncomfortable sink. Whoever designed those had a sick sense of humor. Who's neck is really supposed to bend like that? It is not my salon I don't like....I actually love them. Especially the woman who cuts and colors my hair. She really is awesome. It is just not the treat it used to be because of the CFS. It is however more important now more than ever to feel good about how I look. I know how this sounds, but there is something to it. If you let yourself go you feel worse. True!!! So I continue to do my hair and occasionally the nails too. Someone wise told me"do something nice for yourself every day". It is the best advise I have had!!!
Exercise is the hard part. Too much is bad and too little is bad. What do I do? I have always worked out. I enjoy it amd how it makes me feel. Plus there is the extra bikini motivation in the summer. What do I do now? I hope the new Dr. has some advice on this. I am kind of an all or nothing girl. My workouts were great. Lot's of lunges and sit-ups after some weights and cardio! I miss this tons!!!!!
Off to breakfast....well the kitchen! Need my Kashi and bananas fix! Later the daily dose of "chick lit". Love it!!!!

Monday, April 13, 2009

Day One

I have decided to share my journey through life with living with chronic fatigue syndrome. The good the bad and the ugly! I have just recently been diagnosed, but have been living with symptome for several years. I was just told I got sick easily. I started to wonder why the same symptoms kept returning over and over. I also wondered why I would feel sick for such long periods of time. I felt like a guinea pig...test after test after test! I never gave up. I had to have an answer.
I am finally going to see a Dr in NYC who seems to have success helping people live with and move onto feeling better. I am very hopeful :)
I am very grateful to have a very supportive mom. Even though I am 42 and she is 78 I realize how much we always need our moms! My husband does the best he can and gets better with time. I am also blessed with a very strong brother who pushes me and a sister who gives good long distance support. My two cats provide awesome bedside(actually in bed) support!
I don't want this to be a "wo is me" post, but an outlet and maybe give hope for others like me.
I am sure I am worse and better off than many. I am grateful for sooo much. I feel good just putting my thoughts out there!
I do notice one thing for sure. People are really busy these days. You need to be your own motivator! I always thought of myself as having a big circle of friends. It gets smaller over time.
The smaller it gets the stronger I must be for myself. I have no kids of my own, but about 7 that are 16 and up that I used to work with and adore! Frankly I don't know what I would do with out them.
I am loving these longer days of spring and am sooooo ready for summer. Everything is better in the summer. The beach is my home away from home. My church. My gym. My calm in the storm. Needless to say I LOVE IT!!! When I(we) retire I want to live somewhere that's a slower pace and as near to the ocean spray as possible. I have a distinct vision of my "happy place".
Time to have some dinner and then retire to some cheesy novel. I was a serious reader of quality non- fiction for a long time. I find thought when you are feeling under the weather that "cheese" is the way to go. British chick lit is he current choice and I am not ashamed :)
Let's hope for a good night sleep as that is the key to starting the day right. That and a kitty or two greeting me with that smelly kitten chow breath.....:wake up and play mama!"