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Posted 9/8/2009 5:40 PM (GMT 0)
Just checking in and I have a question. I have been feeling so good for so long now. (No treatment as of yet), I had surgery (2 hernias repaired on Aug 10th and healing quite well), but this last week I have been severely aching again, no energy, just want to sleep etc...just like 2 years ago. Am I relapsing? Have not had full bloodwork since May and at that time I was doing great according to Dr Franette (my liver Dr). I have had alot of stress though with my youngest son, Matthew, who is a senior in high school this year and trying to do things i know nothing about such as trying to get a FULL football scholarship. He really is good. Also he has been getting overheated and his blood pressure has been going sky high during the games. The Dr who is at our home games and one of the coaches (his girlfriends dad), said he is just taking on the full pressure of the past 2 games because our main defensive line has been out and he has had to pretty much "DO EVERYTHING" himself. Most of the defensive line will be back this week. They were out for 2 games due to getting in trouble either at prom time or during the summer. A couple more were late to sign up. Does this seem right to you. I know, I hardly ever write, (but I do read) and all I have is a bunch of questions. You know I want to tell you all again that I consider all of you very dear and close friends. I live in a very small town and have a few close friends but as we know, we are the only ones that know how we are really feeling. Although one of my closest friends who is going to be 70 on her next birthday , has autoimmune disease with such bad RA. She knows pretty much how I feel and I pretty much know how she feels. But everyone else thinks as long as you look OK you must be OK and there are getting to be too many days again lately that I am NOT OK.
Anyways,, any thoughts or suggestions etc or just hellos are always appreciated

Oh by the way, I don't know if you have seen it but I received a magazine the other day that has a Hamilton Collection page in it. They are selling an adorable little girl "DRAGON" for only $19.99. I asked my dad to but it for me so when I look at it everyday I can tell it that I am NOT going to let the dragon get me!!!

KAREN in Nevada

"WHATEVER HAPPENS IN LIFE.........I WILL HANDLE IT !!!!!""
Posted 9/8/2009 6:48 PM (GMT 0)

Karen, it could just be stress, but I think you should make an appt. with your doctor's office to have blood work done and perhaps a scan of your liver.  Surgery also takes a lot out of a person.  I had a hip revision on Aug. 12th and my energy level is about zero right now.  Since I'm only 50% weight bearing until the 23rd, everything takes such a major effort.  I have been sleeping a lot more than usual, although I'm healing well.

I certainly know how it is to "look fine" and feel lousy.  People that don't have liver disease just can't comprehend it.  Everyone here knows how you feel. 

Do be aware that blood work does not always tell the full story, which is why I also suggested a scan (with contrast.)  Please get tested and relieve yourself of the anxiety of not knowing.

Hugs,

Connie

Posted 9/8/2009 7:19 PM (GMT 0)
Connie, thanks for responding. Its nice to have someone back up what you are thinking. I feel so stupid alot of the time. You know..no control anymore
Karen
Posted 9/9/2009 1:46 AM (GMT 0)
Karen, I would get the bloodwork done, etc and follow with your doctor just to give you peace of mind if anything.

By the way.....I LOVE the dragon idea!!! What a great motto for you.....you will fight and not let that dragon get you down!!!

You hang in there!

Mer
Posted 9/9/2009 9:15 AM (GMT 0)
shocked   nono Hi everyone. 

     Look OK feel OK. I don't think so. I feel so tired all the time. Of course it does't help to be in constant pain all the time. Mostly arthritis. I was told in the beginning that I may live 48 hours or 1 year. Three years later here I am . Going to Dr.s who can't do anything for me because my meld score is so low. When I went to my appointment in April  my ammonia level was the highest it has ever been, but every thing else was fine. They said everything is OK. Last week my husband made me get paper work to go get lab work for ammonia. He said I was acting weird, we have been married for 37 years and all of a sudden he noticed. turn So I went even though I had just seen my local Dr. a week before and he said he did not need blood work if it was being done regularly Mayo. Well it turned out it was lower than it had ever been yeah    Today I got my appointment schedule for my check up at Mayo. Echo, Bloodwork, CT scan, and visit with Transplant Dr. Over 600 mile drive for half a day of appointments. To top it all off. " I really got a lot of help from SS When they gave me early Medicare. I had to change insurance Co. and this one will not pay for expenses and travel. Not just that but I got a bill from my primary DR. for the visit, which is something I had never had to pay before . So instead of helping me  they scrrrrr me.  Now it's a matter of do we drive or do we fly. Last time we had to fly because My car was totaled and it was really hectic to do all that walking especially after having had my last foot surgery. Which by the way still is'nt right. I give up. I'm not even going for the final foot exam. He may want to do surgery #7. Im tired of every one saying you look fine. I've gained 20lbs. this year , and it isn't water I have never in my life been this heavy. Even when I was pregnant . There is something wrong. I am still on veg. fruit ,nut, soy  diet. I can't very well go on saying I'm sick I don't feel right I ache all over and can only take half a tylenol for the pain. So here I am at 3:00 am with my online friends. ENOUGH. excuse my griping you know how I feel, have a good day.           shakehead ""OK"" shakehead june

Posted 9/9/2009 8:50 PM (GMT 0)
June, I've just accepted the chronic fatigue as the way it is and is going to be.  Since I don't want to subject my body to hep C treatment, there's no chance it's going to improve.

I do want to caution you on the Medicare and Mayo.  Do NOT sign up for a Medicare supplement, which will be an HMO.  Mayo does not accept them!!  Since you got a bill from your primary care doc, it makes me wonder if you haven't already signed up for a supplement and your doc is not in the network, so you got a bill.  If you do not have the supplement, you can go to any primary care doctor who will take Medicare and it should be paid for, though you may have a co-pay or owe 20% of the bill.  I had just signed up for a supplement when I first went to Mayo and had to stop the application in order to be treated by them.  They do have a charity fund that will pick up any balances that insurance doesn't pay.  You have to fill out the forms and submit 6 mos. of bank statements and proof of income.  They covered me for 3 yrs., but this year they are refusing, saying I don't meet their guidelines--though they don't say what their guidelines are.  Nothing has changed on my end, so I'm thinking they may limit help to an individual to 3 years or maybe they have a cap that I've reached.  I'll find out when they start billing me for my recent hip surgery.  The surgery was necessary and I had had all the pre-op testing done when I received their letter of denial.  So I decided I had no choice but to go ahead with surgery and worry about payment later.  I know that Medicare and Medicaid will pay for most of it.  Since I had NO insurance for 12 yrs. prior to being approved for SSD, Medicare and Medically Needy have been blessings for me, allowing me to go to Mayo.  I always had HMOs when I did have insurance previously.

I had lost 10 lbs. rapidly after hernia surgery, without even trying, but have gained it back.  I am quite sure it's from lack of mobility.  This is probably the case with you, between feeling fatigued and your foot surgery.

Hang in there, guys!

Hugs,

Connie

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