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Posted 7/19/2010 4:15 PM (GMT 0)
 

     Well it is another beautiful monday morning! Though I would love nothing more than to turn on my ringer off, get out my hobbie supplies and tune out the rest of the world...... it is monday. There are tasks to complete, jobs to do and appointments that need to be kept.

 

      Often times we are so busy supporting others that we often forget to update about ourselves. So, before we get too wrapped up in starting out the week... please, stop by and let us know how you are doing. Even if you are in alot of pain or not in much pain, give us an update. We want to know how you are doing.

What are your major planns for the week? How are you feeling & what has your pain scale been like over the weekend?
Posted 7/19/2010 6:08 PM (GMT 0)
Hey All , Well this weekend was better for me , I'm still coughing but its better and I'm on anti-biotics for it , the cellulitis in my leg really seems to be better , my knee doesn't hurt like it did its now just mostly my hip , where its supposed to be . So when I lick this cellulitis hopefully I can get the hip replacement . The hip still hurts a lot , but I feel better because its not the knee and hip , so while I still have seriuos pain in the hip it's less for sure , so thats good , my last t-cell count was 395 the highest its been in a year !!, thats good too , but I'm just taking one day at a time as I have a habit of waking up with a new pain or cough or something , just trying to enjoy the moment and hope I can walk normal soon . thanks, Mikel
Posted 7/19/2010 6:18 PM (GMT 0)
I've been in a lot of pain in my back....I'm surprised by this because we have our new Tempurpedic bed and I thought it would help more with this.....?

My Lyme disease is a real problem right now....and I'm suffering from side effects of the many many months of antibiotic therapy I've undergone for LD and coinfections: possible MRSA and C. diff infections!

The good news is that we've moved to a cooler, cloudier climate zone in the hopes that it will help prevent my lupus and Lyme disease symptom flare-ups (heat and bright sunlight seem to be triggers). We're less than a mile from the beach, and I hope to be able to go enjoy the ocean views sometime soon!

I hope that everyone is having a low-pain day!
JoAnn
Posted 7/19/2010 6:50 PM (GMT 0)
Well I dont know whats going on with me. I have severe muscle cramps. More than the usual spasms and twitching. I have belly cramps and cramps all over. very odd. I also have nausea and "lower" digestive issues.  I also have a pain under my left ribs..

I called the pain clinic and they said that is sounded like my electrolytes were out of whack.

Suggested I call my pcp and have him order electrolytes on my current lab order.

So I am trying to figure out when I could go. It will either be tonight or in the am.

I feel so blah.

but on a GREAT note.. I received a random check in the mail for money I was not expecting, Its nota ton but I am  really excited and boy do I NEED it.

melissa

Posted 7/19/2010 8:34 PM (GMT 0)
Hi everyone.....my plans for the week....yay, it is finally almost here...Shannon and I go see the rheumy on Wednesday!! Not looking forward to the 3 1/2 hour drive there but glad that we be getting to the root of the problems and finding the right meds! I know it is not going to be an instant thing, but at least we will no longer just be in a holding pattern!

I am now weaned off the steroids and feeling pretty yucky and achy, but that is okay because I think they were making me feel pretty yucky also!

This weekend was awful!!! I know Shannon already posted about my niece and nephew being in a bad accident....well the stress and standing for too long in the hospital really made my back and everything else hurt! The important part though is they are alive! My poor niece still looks awful...every time she walks by me in the house, all I can say is poor baby! She still has cuts all over her face and now the swelling is terrible! She is hurting bad! I told her she should be the poster child for wearing seatbelts!! My nephew is doing a little better, starting to realize that it was an "accident" and starting to ease up on the blaming himself! We are still worried about both of them! This was a very hard lesson learned!

Thoughts and prayers to my HW family!

Take care,
Beckey
Posted 7/19/2010 10:29 PM (GMT 0)
Good to read everyone's updates :)

Pretty much the same around here for the week. I'm now over 26 weeks pregnant w/ the girls. They are both just shy of 2 pounds each. Trying to make it to 32 weeks. Still struggling w/ my sanity being on bedrest - but it's not as bad as last week. Pain is just there and something I'm really trying hard to deal with. Have doctor appointments on Friday. Next week, I start going in 2x per week.

One thing that has kept me going is the amazing kindness of people. We've had people bring us meals... take our kids places and so forth... offer to do laundry, ironing and so forth - just all kinds of amazing things. But the thing that has given me the most emotional support is the e-mails, cards and phone calls of encouragement. Just having someone say "Hey, I'm thinking of you" means so much. I'm so thankful for the people I'm blessed to know - which includes my HW family here. It still amazes me how this board has formed some incredible, life-long friendships.

Hope you all have a good week, and as little pain as possible. Take care - Tina
Posted 7/20/2010 1:20 AM (GMT 0)
I've been doing well. My stimulator is working well & I am quite pleased.

This evening I went to see my neurosurgeon for my 1 wk (10 day) post-op follow-up for my trigeminal neurostimulator. I got all my dressings off & my sutures out (yay! the ones behind my ear were really driving me nuts because they were right where the ear-piece for my glasses go). He did a really good job with the incision on my chest. I was really surprised, you can barely even see it! It just looks like a very thin 2 in line, & you can't see the outline of the stimulator either. You'd never know that I had all these wires in my face & neck & a battery in my chest! My surgeon was thrilled about how well everything went & how well I'm doing with the stimulator. I got two huge hugs from him. With all my insurance problems over the last 6 mo & the unusual nature of my condition, I've become kind of the "office celebrity." Everyone knows who I am.

I also got my stimulator reprogrammed for the first time today. We just tweaked things, as it was a little hard to program right after surgery, because I was still pretty numb. I'm already noticing a positive difference with the new programing. My Medtronics rep has been really fantastic throughout this whole process. I will meet with him again at my 1 mo follow up at the end of August.

I had my mom drive me to my neurosugeon's appointment, as it is an hour & a half away, and that much driving is hard on my eye. The nice thing is that we made an evening of it & went out to dinner at one of Iron Chef Mario Batali's restaurants on our way back. Mmmm, it was so good!

Skeye
Posted 7/20/2010 4:15 PM (GMT 0)
 

     Well, it was a hard weekend, no doubt.....

 

     Friday and saturday were very hard. My spine has a deep "flu" sickness feeling. Deep, under the spine. The swelling and tenderness has me constantly on the verge of loosing my lunch. So much pressure.

 

     My hips are.... feel like they need to pop and stretch. All the time. They have a deep "tugging" sensation with the stifness and ache. My upper right thigh, right outter hip and right heel are numb for days at a time. It used to only happen when I sat or lifted my leg up for a long peroid of time and would only last as short while. Now, I wake up to numbness and it lasts days.

 

     I have 2 new areas that have been getting the non stop "under the skin itching". Now the one on my neck has begun to feel tender and swollen. It does concern me somewhat, only because in the past an area would have the "deep under the skin itching" for about 6months before any "swelling, tenderness and pain" would begin. This time it was only a little over a month or so. It is, a pretty big concern in the back of my mind.

 

   Looking at myself in the mirror is.. well, frightening. Everything "looks" worse than it is when I am not feeling good and slouching. But my right hip. Gosh you guys, its going so fast. GOsh so darned fast. It is very spooky because at first the muscles in my upper right thigh and middle abdomen looked "pulled and stretched" to the right. Now my muscles look completly normal except that the areas that were pulled looking are now just off center and larger muscles. Its so... freaky.  WIth my hip roating so fast to the rear I am frightened. This is getting scary. I am just down right frightened to my very core. I dont know what they are going to do when they see me in a few weeks.

 

     One small bit of good news though. My knees are still doing really good. It is down to just mild / moderate pain. My right knee, on the inside, popps alot. It isnt painful or anything. It just a constant mild... soreness. Nothing big atall.

 

     I went down and gave blood for my parathyroid absorption, hypoparathyroidism (inherited) tests.... I havent been able to kick my caffiene habbit. I know! I should never had started again when I went to Florida. I thought that since I was able to stop last time, I would just stop again when I got back from vacation. I just can't seem to do it. I have tried an failed many times. I will try again today. But, by now, the endocrinologist will know I have fallen off the wagon. I just hope it doesnt effect my tests to badly. Gosh it is just so hard! I love ice cold soda pops, warm lemon tea, and fresh hot sugary coffee. Argh!

 

     So, thats whats going on in my neck of the woods :-)

 

*hugg*

  dani

Posted 7/20/2010 6:54 PM (GMT 0)
Hi Dani.  Maybe you could switch from caffeinated pop and tea to decaffeinated.  I know the tea may still have a little caffeine like the coffee does, but it would be a lot better than drinking the caffeinated ones.  Hope that helps.

 

love and hugs

Loretta

Posted 7/21/2010 3:50 PM (GMT 0)

     Thank you! To all of you who let us know how you are doing. For those of you who havnt posted an update, please, pop in and tell us how you are doing.

Posted 7/22/2010 1:41 AM (GMT 0)
Hi all, I've been AWOL again. School holidays and lots of assessments prior to them have had me very busy and I just kind of feel very flat lately. Going through the lack of emotion stage makes it hard to reach out to people, I'm sure you've all been there.

Back to work this week and found it extraordinarily hard to get my thoughts into a coherant order, sort of stumbled my way through my lecture series.

I've started to see a psychologist, been twice and its kinda nice to be able to talk about things. Shes getting me to list all the things I miss about the old me, sort of grief councelling. Then list all the positives about the new me. Its easy to list the negatives but I'm trying hard to find positives too. I tend to be a bit of an ostrich, just don't want to think too deeply about it all.

I see her again Friday. Dani, it must be so scary for you with your body twisting at such a rapid rate with the frightening knowledge or lack of knowledge of where it will go from here. My thoughts are always with you , even when I'm not on line, golitho
Posted 7/22/2010 2:41 PM (GMT 0)
Hello everyone, I am hanging in there by a thread. On the 9th my house almost caught on fire by a mouse chewing thru the wires. I caught it as it was starting to flame. Fire dept., came out and turned our power off and we still have no power.A friend loaned us a genarator but no money for the gas. So we only use it for a little while at a time. have been trying every program I can to get help, but now it is a waiting game. My pain and nerves are at a all time hi. I feel like I got ran over by a mack truck and then he backed up.

My mental Dr refuses to listen to my stress and gave my 6 days of adivan to get me thru this stuff. The stress is causing me to hurt more and the more pain I am in is causing more stress. Why do they not listen????

The people here is what is helping me alot. I can get on as long as we have gas for the genarator
((((((((((((((( all))))))))))) Thank you


Butterflyrose
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