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Old 12-11-2005, 06:22 PM   #1
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Join Date: Mar 2004
Location: Hershey, PA.
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patience 50 HB User
Talking Hello, How is everyone?

Hello all. How is everyone doing. It has been more than a month since I was able to come and chat. DH mother had a massive stroke the end of Oct. and I have been spending a lot of time with her, first for a couple weeks in Pittsburg, then the past couple of weeks in Mechanicsburg but even though she is closer now I still spend much of my time there.

Now the holidays are upon us and somehow I got volunteered to have not 1 but 3 family gatherings. I'm tired just thinking about it and I'm tired anyway.

I'm just groaning. Actually I am well, except of course for the fatigue. My body is stronger than it has been in several years and I am very happy for that. The more I try to do the more I am able to do. After 6 years of getting weaker and being able to do less, I am so very pleased to be able to do more. Again, wish the fatigue was go away.

Enough about me. How are all of you? I have missed the boards and the discussions. I always learn so much. Felicia, how is your little joy doing? VeeJ, are you still researching problems and finding answers for all of us? Goldenwings, how are you feeling. I hope in the past 6 weeks you have completely recovered from your surgery? I hope so. Glojer, I missed you too.

There is other news I want to share. My niece was dxed last week with lesions on her brain. Tests are on going but the Dr.s are saying either Neurological Lupus or M.S. She has been plagued with pleurisy three times in 4 years, several pneumonia's every year and repeated kidney stones and kidney infections. She has also had episodes of fainting and tremors for no reason. She is the same age as our daughter, 29, and has a 5 year old little boy. When she mentioned to her Dr. at her last check up that her Aunt has a form of Lupus the Dr. naturally began testing for autoimmune diseases. The cat scan revealed brain lesions and an MRI gave them a better picture of how many and how large they are. As I said, testing is ongoing but either diagnosis is bad news. Pray for Crystal, she will need all God's help no matter what the Dr.s decide on.

Hope to be on a little more regularly now.

May God Bless and Keep Us All
Patience 50

 
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Old 12-13-2005, 03:17 AM   #2
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Re: Hello, How is everyone?

I am sorry to hear about the stroke, I know they can be devastating: my Dad had one almost two years ago, he and my mother both live with me now. My mom had chronic hypertension, diabetes and anklyosa spondylosis. I am sure I spelled it wrong but its almost 5am and my brain's spellchecker isn't awake yet, lol! I go to the Dr. today for my weekly prenatal visit. I was having problems with my blood pressure, and horrid joint pain. My baby on the other hand is growing, and kicking and thriving, and when I hurt the most she seems to give a lil nudge to get me through it. My sun sensitivity has been extremely high. I will get the results of my blood work today, and my MRI for my back. My doctor since 2003 is very proactive about trying to stay ahead of my flares. He is the one thatreferred me to my rheumy and she is great. I wish I had been on here more, because I find it so informational, and a a comfort from all of you. beware of the holidays. My mom is back in Texas, and trying to keep up with my parents is very grueling at times, and the functions that they want to have , and amount of company that comes by, the fatigue and be so wearing. I know going up and down the road on 76 and 78. I traveled that road quite a bit. My prayers are with you and your family and I hope that continue to stay, and not over do it, even though its so easy to do during the holidays with just regualr stresses. I will write back later after my Dr. appt. Good to hear from you
Felicia

I am so glad when your neice mentioned lupus it was looked into i hope in a timely fashion. God bless you all ,Happy Holidays!

 
Old 12-13-2005, 05:47 AM   #3
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Join Date: Mar 2004
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Re: Hello, How is everyone?

Good morning Felecia,

I'm happy to hear baby is doing fine. Some pregnancies have fatigue too so it may not be all the Lupus. DH's Mother may never leave the facility. Her left side is completely paralyzed and after several months and intensive rehab there is still no improvement. The Dr.s are telling us to prepare ourselves for the strong possibility that she will need to stay where where she is. They have talked to her about it and of course she is in denial and insisting she needs to go home and recouperate. She is such a very big woman and is hard to manuver, even with the sling lift. It will all work itself out in God's way and in God's own time. I feel so sorry for her and the other's like her. I have always had a soft spot for seniors. I worked for the local agency on aging for 9 years when I was younger. I used to take my kids along sometimes and the clients just loved seeing them. I just hated when we had to arrange for one of them to be placed in a facility. They were so unhappy.

On a personal note, we will be in Texas in Jan having a late holiday celebration with our oldest son and his family. They live in one of Ft. Worth's suburbs. I'm certain I will be exhausted when the holidays and our vacation are overwith but I can sleep all through Feb. if I like. No need to count another birthday anyway.

Take good care and let me know if you have decided on a name in my absence. I only read a few posts the other day but I know there must be several pages that I missed.

May God Bless and Keep Us All
Patience 50/ Bonnie

 
Old 12-13-2005, 10:03 AM   #4
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darkwater HB User
Re: Hello, How is everyone?

Hello, all. Glad to pop in to say hi and wish everyone a pleasant and healthy holiday season. Take care of yourselves, as it is easy with all the travel and extra company and kids to let stuff slip. Don't let yourselves get too run down, folks! I hope you all can find reasons to be grateful for life as we approach the end of the another year. Wow, this year has flown by in the blinking of an eye, is this how it is as you get older? So glad to hear from Felicia, you have been in my thoughts. So good that your baby is doing well and that you are holding up under the increased symptoms. Please let us know how your latest checkup comes out. I am about to be married in February or March, and am hoping to start trying to become pregnant. There are so many unknowns, but you are an inspriation. I am doing well, besides having a UTI, but I am going to see my doctor today to get this taken care of, hopefully.

I feel I let my own care slip recently, and I now have my first UTI since May because of it. I have been doing so well with my cranberry juice and water, drinking one big glass of juice each day and lots of water. In the same time period last year, I had around 4 UTI's, and since the only thing I am doing differently is this, I do feel it has made a lot of difference. But last week I ran out of juice and was just so busy running around that I didn't get to the store for more, while at the same time I became dehydrated because my normal schedule at work and home was thrown off and I didn't make provisions to take water with me where I was at. So, I guess the combination of no cranberry juice and not flushing out my bladder with lots of water made for very concentrated urine full of bacteria (due to... ah-hem... must confess to lots of sexual activity lately, one of the main culprits for UTI's).

This UTI is a bit strange in that it is the first time that I have tried to pee and absolutely could not pass a drop. I felt the urgency that you get with UTI's and immediately began drinking large amounts of fluids to fill up my bladder, but could not pass a drop after several tries. This is maddening! You feel like someone is sitting on your bladder and you are going to flood the world, and run to the bathroom and it refuses to come out! After several more hours of chugging juice and water, it finally let go. Weird! I see a round of Cipro or Levaquin in my future....

 
Old 12-13-2005, 02:00 PM   #5
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Re: Hello, How is everyone?

Hi! Glad to see you 3 checking in. Felicia, glad to hear your little one is coming along well & hope your prenatal visit results are fine.

Patience, sorry to hear about your MIL's stroke & now your niece facing some sort of brain Dx. Your poor family... I hope both are getting the best help possible.

Aquanegra, you sound frisky [ ]---except for the UTI, that is. I hope you get that squared away ASAP. I know that drill... Ugh! And if you have anything with alcohol, maybe you should double your water ration?

I am pooped & have a load of pain, thus have decided that I must pace myself a little better. 28th wedding anniversay coming up this weekend, so I best not sleep through it. Doggie helped me wrap packages---a colossal & absurd mess, but he made us laugh pretty hard. BEST HOLIDAY WISHES TO YOU ALL! All my best, Vee

 
Old 12-13-2005, 03:49 PM   #6
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patience 50 HB User
Re: Hello, How is everyone?

Hi VeeJ,

Good to hear from you. I'm sorry you are in pain. Mine is very minimal at the moment. My biggest problem is fatigue. I seem to have caught a cold too. The first I have had in many years. Dr. seems to think it is great. She says maybe with the lack of pain and swelling, no recent tissue tearing, gaining strength again, it means my immune system has backed off and is going to be a little more normal for a while. Don't know if it is or not but I have no intention of looking a gift horse in the mouth as it were.

As to the family, it must just be our turn. We all will just have to put our big person panties on and deal with it. I do feel so bad for my niece though. Really, all those who are so young and facing raising children. If I have had this disease as long as they think, I'm truly happy I didn't know about it before and that it wasn't that severe until now.

I too finished wrapping all the Christmas gifts today. Three of them I had to do twice because some used tissues got caught in the tape. Now comes the baking and cooking. This Sunday is our first family gathering. We are slated for 4 of them. Not sure if I'll make them all but we'll see. Think I'm going to take my stuffy nose to the couch and rest. Take care. Hope your pains ease up some so you can enjoy your anniversary, 28 years. WOW

Merry Christmas
Patience 50

 
Old 12-13-2005, 05:57 PM   #7
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Join Date: Mar 2004
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Re: Hello, How is everyone?

It just occured to me that I sounded as if I made a huge leap in assuming my disease is not active because I have a cold. Actually, I went to the Dr. this morning to get the results of a digital echo cardiogram and some spinal MRI results. The MRI shows some more degenerative activity but according to my Dr., nothing that wouldn't be expected for my age and it is very minimal. Also, the echo cardiogram showed that the walls of my heart have not experienced any more thickening. I have experienced random chest pains and thickening heart walls for more than a dozen years now so to have no new thickening since the last echo cardiogram was done 14 months ago is quite something. It also appears that the leaky valves aren't leaking so much at the moment. Overall, for some unexplained reason, my cardiac hypertension appears to be easing up as well. At least this is the current interpretation of the tests. Further, an untral sound of my kidneys shows not only no new lesions, but the ones that were there previously appear to be smaller. I'm not going to argue. Add to that those facts that my body over all is stronger and I have experienced no new tearing in the connective tissue in my joints that can be found, and we draw the conclusion that the disease is not active at the moment. I'll take it and hope it continues for a while.

Merry Christmas
Patience 50

 
Old 12-30-2005, 02:28 PM   #8
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Re: Hello, How is everyone?

Okay, I just finished a post a couple of minutes ago. I was kind of drippy in it--my apologies. I just had a fairly lousy afternoon, I guess. Anyway, I saw the post about Patience having a cold. and this possibly meaning the disease is not active. Now, I am excited. I have a cold. I actually get colds, bronchitis and strep quite often. So, if Lupus were my problem would I not be cold-free? It seems that if one has a cold, the disease, if that is what I have, is not active. If something is not active, then it would not affect muscles, sleep patterns and so on...Right? If I have totally misunderstood that post, I am sorry. I just had to ask, if I was getting a clear picture here because that seemed like good news.. I think.
Hope everyone has a safe and enjoyable New Years. If I feel better, I will be going to see Notre Dame versus Tennessee girl's b-ball. My daughter is a high school varsity player, and this is a group outing with the team tomorrow. I'm really dreading the bleachers, but to spend the day with my daughter and her team, I am hoping I can get through it. If all else fails, I'll rely on pain killers...those seem to make climbing a bit more endurable. Anyway, I intended to just comment on the cold thing, and I'm rambling. Take care...
C

 
Old 12-30-2005, 04:27 PM   #9
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Re: Hello, How is everyone?

Hi Cherylynn1964,

What you are getting is an acurate picture of me. Not everyone has this que to activity. As a matter of fact my cold lasted all of 14 hours and then all symptoms left on their own so according to my Dr.s my immune system is still working overtime. I don't think I would like colds too much anyway.

A friend of mine who has SLE gets colds and other infections all the time so I suppose I am not typical.

I do, however, get my share of pneumonias and sinusitus. Not lately though. My Dr. thinks my Lupus is active as my fatigue level is high and my face, arms, neck, and chest are so bright red to the point of looking like a deep sunburn. Some blood was drawn today but we won't have results for a couple of weeks. In the meantime I have 4 more days to rest and relax before we go to Texas to have a late Christmas with our oldest son and his family. After we return home Jan 11 I think I'll just sleep through the rest of the winter. I really didn't think this would happen as I had delegated chores for the holiday dinners.

I also have been having trouble sleeping and the creepy, crawlies are on my arms and chest again. I suppose I am really going to have to consider some other medication. Dr.s have been strongly suggesting since fall. We'll see how the vacation goes.

Between now and then I hope and pray that you will all be well and have a Happy and Wonderful New Year.

Felicia, I am thinking of you often, especially when our daughter comes around as she is almost 5 months now. We hope to find out on Jan 4th what grandbaby #8 will be. Even after so many I am getting so excited. Hope all is well with you and your little joy.

May God Bless and Keep Us All
Patience 50

 
Old 12-30-2005, 04:49 PM   #10
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Re: Hello, How is everyone?

Patience have a great time in Texas. Thank for the reply. Somehow, I knew the cold thing was going to be too good to be true for me... Ah well, it was a good thought while it lasted. Take care of yourself.
C

 
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