Mrs123 need to hear from you

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straydog
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Date Joined Feb 2003
Total Posts : 16793
   Posted 6/24/2011 11:23 AM (GMT -6)   
Hey Sandi, I have had you on my mind wondering how you were coming along in lining up more drs opinions? Jeesh, its amazing how time consuming it must be to look for these guys. When I think about it, I am not even sure how you begin to go about researching the dr you need for a consult. Do you spend a lot of time on the phone making cold calls trying to weed them out or what? Just have not seen much of you lately and am wondering how you are doing.

Things have been nuts this past week at my house. My husband got put back in the hospital Monday afternoon, for the 2nd time since March with a large blood clot in his leg. After reviewing the old & new doppler they really cannot determine if this is a new one or the old one. They have had quite a time getting his numbers right, he has very thick blood and now he is way, way too thin. They stopped the heparin and now are doing shots of Coumidin. The dr said yesterday he may get to come home today, it depends on what his numbers are. He is a mess, they have him on a 2000 calorie diabetic diet, he swears his stomach thinks his throat has been cut, lol. I finally had to tell him I am not Meals on Wheels, I am not making three trips a day to the hospital with food. I take him something for dinner and usually grab something for me to eat too.

I have cellulitis in my left leg starting up again. I have a small hot spot full of fever on the right leg, its a small area. A very nice outbreak of psoriasis on my feet and face. I have literally scratched my feet raw they itch so bad. I scratch them in my sleep. I read sun is suppose to be good for psoriasis but so far that has not held true for me. I imagine stress has brought this recent outbreak on-if I stress it triggers it.Wonder why I am stressed, lol. I saw my gi Wednesday, he is a great guy, he just shook his head when he saw my legs and feet. You know its odd, they do treat severe psoriasis with Humira, which I take for crohns disease but it has done nothing for for mine. That has the dermatologist & gi both stumped. But, its like my gi said, you do not do like most normal people so why are we surprised, lol.

Please give us an update when you get a minute. Take care.
Moderator Chronic Pain Forum

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/24/2011 12:11 PM (GMT -6)   
Sandi....
 
I, too, have thought about you MANY times.... I'm sorry that I've been horrible about checking up on you - so I was glad to see this thread, here.  You've always been such an encouragement to me - and I'm sorry I haven't been so proactive in returning that to you.  BUT, I promise that I have thought about you and hoping you are doing ok....
 
The last I remember is that you were having to make some pretty tough choices.  Would love to hear how you are doing.... what you ended up doing... and anything else you are willing to share.
 
Hope you and your family are doing well.... Many hugs, thoughts and prayers.
 
--Tina

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 6/24/2011 6:36 PM (GMT -6)   
Hi Sus,
I have gotten a bit side tracked with taking care of me at the moment. A very, old and dear friend of ours lives in Singapore but has in the last two weeks come back to the states because he is in dire need of a liver transplant, so the doctors over there have told him.  He took my wedding photos almost 20 years ago, and my husband and I knew him before that so he is as close to family as he can be without being directly related by blood......he has been in and out of the hospital in Singapore but he was going to come back to the US to see some doctors here for their opinion and of course he was too sick to travel before now. Anyway, he finally arrived with his wife- whom we adore but she doesn't drive in Singapore and definately not here in the states. We have been busy trying to help them locate some doctors, visiting the ER with them several times since their arrival, and of course being worried sick about him and her.
He's been in the ER three times and the doctors here are giving him a run around, telling him that he needs to see a GP here for his care......they did finally refer him to a gastroenterologist, who told him that he wouldn't see him for two months!! Can you believe that? So they found another one who told him that he didn't look sick.....he looks terrible- and that's being kind. We saw him last a year ago and he was happy and really healthy looking- he looks like a shadow of himself.....the third gastro we found refused to see him until he had a complete physical and bloodwork by a GP here.....despite the fact that he has all of his test results from the ER here, from his doctors in Singapore, from his most recent hospitalization before he came here, and all of the tests and results they did there.....
Anyway, I helped him finally find a liver transplant doctor in one of the major hospitals in our area and hopefully he will finally get some help. We also located yet another gastro doctor that specializes in his condition so that should help.
As for me, before all of this, I hadn't had much luck in locating a doctor, let alone two and have kind of given up at this point. Maybe after we get some answers about what is going to happen to our friend, and his prognosis, and the possible information regarding his need for a transplant or not being imminent, I will start searching again. Right now, his problems seem to far surpass mine and they don't have anyone else to help them right now, so if his condition takes a turn for the worse, we need to be there to help them.....
I'm sorry that your husband is so ill again Susie, heparin is so hard to regulate, and given his medical history with clots, it's obviously not working as it should. Maybe the coumadin will be better and more effective for him than the heparin. What about the other anti clotting med apixaban and Xarelto? I found this about the different meds and their uses http://www.informedhealthonline.org/the-safe-use-of-anti-clotting-medication.624.en.html
The poor guy must be starving , most hospital food is not that good, even in the best of circumstances.
My daughter has eczema and we have found that putting some light olive oil works wonders for the drying . Have you ever tried that? I read it on some website that it works for eczema and psoriasis too. It might be worth checking into. I don't know how well it might work but maybe?
I have  a friend who was on humira for his too and it didn't do much to help but maybe if they adjusted your dose? Maybe you need a higher dose than what you are currently taking? I don't know much about that particular drug so I probably am way off base....
I do know that his gets much worse when there is additional stress in his life. He's talked about how it effects it and makes it rear it's head in areas that he normally doesn't get it. He says the only thing that helps the itching is the topical cortisone cream for psoriasis that he gets at the pharmacy over the counter. I will ask him about the name of it.....
I'm sorry to read that the cellulitis is back again. Have you been on a stronger antibiotic for a longer period of time than the standard ones they normally give? Like avelox? I have to take that , rather than biaxcin or cillians because those don't work, and even with that, I have to be on it for longer than most people in order to clear my lungs when I get a respiratory infection.
Hang in there Sus, things will get better......that much I have to believe.
For all of us.
Sandi

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 6/24/2011 6:41 PM (GMT -6)   
Hi Tina,
No worries hon.....I just have had a lot on my plate that has taken me to setting priorities, one thing at a time, one moment at a time.
I dont' expect anyone to check on me, and I don't keep count of who does or when.......friends dont' do that, and you , Susie and I am not keeping a count of who asks when.....LOL :-)
I hope the girls and the rest of the family are all doing well.  You've got a lot of stuff on your plate sweetie, so don't worry about me.
I hope that you are doing okay, managing with everything, and taking care of yourself.
Hang in there girlfriend. I will let you know when I finally find the time to take care of things on my end, but in the meantime, will hope that things stay as they are for now.
As long as it doesn't take a sudden turn south, I will keep hoping that I have the ability to buy some time.....
Sandi

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/25/2011 12:32 AM (GMT -6)   
Sandi -
 
I hear what you are saying.... Just wanted to let you know you continue to be in my thoughts and prayers.  I understand how life takes over and puts our health stuff on the back burner at times. 
 
Anyway, all is fine on the home front here.  Girls are growing like weeds - they are 9 months old and crawling, standing, getting into everything.  Boys are doing well.
 
I still have my normal ups/downs, but I've recovered from the pregnancy part.  Slowly but surely! 
 
Anyway, you hang in there w/ everything and keep us updated as you can....
 
Love, Tina

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16793
   Posted 6/25/2011 7:58 AM (GMT -6)   
Hi Sandi. thanks for the update. Wow, your friend and his wife must be getting really disgusted with how the medical community has handled him at this point. How much more disgusting can it get, right? I do hope and pray all of this gets worked out soon for him. If I remember right your hubby is a nurse, so hopefully his knowledge of things can be a plus.

Sounds like you are in a bit of a holding pattern for you at the moment, lets hope it stays there so you can get things handled for your friend.

They finally got hubbys pro time right and he came home yesterday evening. I am not happy with the dr he sees, he has been with him a long time and refuses to let me find someone else. But, anymore PCP's do not come see you & take care of you when in the hospital so you get whatever they throw at you. I will say he has had pretty good luck on these last two admissions with the drs.

It was interesting hearing about how your friend reacted to the Humira too. My dermatologist was puzzled that it has not helped my psoriasis at all. He said he had been having good luck with it. But, I told him I do not react well with meds, guess he believes me now. Right now its all over both feet top & bottom and the bottoms of my feel are split open. I have an itch in my feet that has me nearly to the screaming point. I have bruised my skin from scratching even in my sleep wearing socks. I have a steroid ointment too, oh, I have an arsenal of crap and none works well for me. Yes, stress is a big trigger. Your friend is right you can get in places you wouldn't think of, lol. I get it in my hairline on my forehead and big chunks of skin peels off. I have it in different spots all over my face. I even get it in my ears and belly button. The tops of my feet look like they are covered in hives and I decided a few minutes ago to try a Benadryl for the itching. If nothing else it will put me to sleep, I need it.

I was put on Avelox one time and had a severe allergic reaction. My dr said never again I may not survive it. I am allergic to all cillins too, its tough finding one for what I need. I usually end up doing IV antibiotics for this reason.

Keep us posted on your friend when you get a chance and of course we are always wanting to hear about you. When I realize its been a bit since seeing a post from you, I try to remember to post something to you.

Take care of yourself.
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