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RKMAMA's Photo RKMAMA Posts: 60
11/16/12 11:23 A

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I submitted a pic for faces of ankylosing spondylitis a few months ago, so glad to have discovered the website. And I wear my bracelet!

Edited by: RKMAMA at: 11/16/2012 (11:24)
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
11/5/12 8:54 P

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Sheezzz. I have to get my injectables at Walmart and all my other meds at Walgreens. Can you believe that they both screwed up my prescriptions at the same time.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
10/18/12 6:47 P

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In Case you have not seen it I posted a link. thefacesofankylosingspondylitis.com/ It is for AS Awareness. I hope that I can get everyone on here that has AS to join.

Mark
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HALF2EAT's Photo HALF2EAT Posts: 253
10/18/12 3:16 P

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Yes, that makes perfect sense. :)

eRIN

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10/15/12 6:59 P

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The medications are supposed to keep active inflammation down. He explained what the blood tests meant and they only show active when there is a flare up. I hope that makes since. I am not able to remember exactly how he explained it. This well help to explain it.
www.patient.co.uk/health/Blood-Test-
De
tecting-Inflammation.htm


Mark
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HALF2EAT's Photo HALF2EAT Posts: 253
10/15/12 2:16 P

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Okay...I just read all of these so you don't need to reply to the other post. I hope this doesn't sound ignorant but aren't the symptoms of AS always going to show "active"? I pray to God he gets you on the right regiment. It sounded so promising a couple of months ago. Hang tough my friend!

Love,
Erin

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
10/14/12 5:12 P

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I saw the Rheumatologist again on Thursday. He changed some of my medication. Blood tests should I was having active process of the AS. I am adjusting to the increased medication slowly.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
10/8/12 8:03 P

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My new Rheumatologist was great. I spent 4 hours in his office two of which he spent time to talk with me, 1 for filling out paper work and 1 being tested, x-ray-ed and poked. He found every single Fibromyalgia point on my body. He gave me some awesome statistics. 95% of people with Fibromyalgia have AS. 95% of people with AS have irritable bowel syndrome. I was like "wow!" He explained sleep and fatigue. I took Hydrocodone to help me sleep through the pain. He added Trazadone which is another anti-depresent which is mostly prescribed for insomnia. It helped me a lot. Then he prescribed Donnatal for the IBS which also has barbiturates in it and to be taken at bed time with the other 2. I have never slept so good. I usually on;ly slept 5-6 hours. Now I can sleep all day. Hehe. But I still need a nap in the afternoon but only for a short time. I have not felt this good in years. I go back to see him this next Thursday and he is going to do Bone Density tests on me. Including my neck and spine. He warned me that my neck was very fragile and I had to be careful never to have a fall or I might snap my spine. Great! Hopefully I well not ever have a fall.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
9/2/12 10:21 A

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After a week of being in a lot more pain then usual, the pain has finally subsided. What set of the pain was the trip to take my dad to a doctors appointment to Bakersfield then all the shopping he likes to do while there. 4 plus hours sitting in the car and two hours sitting in very a uncomfortable chair while waiting for him at his appointment and then two hours of slow walking and standing in Costco is what set off the pain. I am Glad after 6 days the pain is back to my normal range.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
8/17/12 12:16 A

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Well, by not taking the B12 my fatigue came back with a vengeance. I had to beg the doctor to let me start back on it. She also refilled my sulfasalzine for me and said that I needed to make it last till I see the Rheumatologist. 1 month of medicine to last to months. I can feel the difference. I wake up stiff and have more pain throughout the day.

I do not trust doctors or chiropractors that move your muscles and bones around. I do not want to hurt more then I all ready do.

Mark
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HALF2EAT's Photo HALF2EAT Posts: 253
8/16/12 11:30 A

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Good grief Sept. 28! Crazy! I know all about hot! I hope everyday that the farmers get the rain they need.
Here's a tip. I went to a reflexologist this past Friday and still have pains in the arches of my feet. It was excruciatingly painful. Do not ever go! I really thought it would help but I ended up having to spend the weekend recuperating.
I hope everything else with you is okay. What has been going on with not taking the b12?

Hugs,
Erin

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erin :)
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8/12/12 10:51 A

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It has been really hot here, but then it is the desert. Lot of clouds in the sky but they did not seem to cool anything off. It was raining north of us but not here.so today well be muggy as well as hot..

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
8/8/12 8:37 P

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Finally, after leaving like 10 messages at the appointment desk for the new Rheumatologist I will be seeing since I moved, I got an answer and an appointment. It wont be until September 28 but that is better then waiting a year like I did my last Rheumatologist. I just hope he is as good as the last one.

Mark
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HALF2EAT's Photo HALF2EAT Posts: 253
8/7/12 11:45 A

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It is so hard to stay on top of these damn doctors. Keep calling. Everyday, It is ridiculous but your health is too important to just wait on them to get off of their butts!!!!! If I can help in anyway just let me know. Other than that I hope you are managing well. You have gone thru a lot and still seem genuinely concerned about others. I hope we can reciprocate.

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8/3/12 10:29 A

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I am sad that is not working anymore for you. I was hoping to see you have good results before I talked to my doctors about it. I am still trying to get an appointment with the Rheumatologist in this town. They have you just leave a message and they have not called back. Sigh!

Mark
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HALF2EAT's Photo HALF2EAT Posts: 253
8/2/12 1:15 P

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Well I thought I had found a miracle drug- Provigil- to help lift the fog and give me energy but the truth is it is not working. I have an appointment at the end of this month and I will see what else is out there. I hate being tired all of the time. I really feel that is one of my worst symptoms. I am almost thinking about trying to go pain med free but I probably wouldn't last 2 days so I just need to keep my head up and try to stay as hopeful as possible.

Erin
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8/1/12 5:48 P

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got a great work out this morning. sleepy now.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/20/12 10:45 A

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well, I slept almost all day Friday. But yesterday I felt great.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/18/12 11:25 A

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Hi Erin

I have been kept busy all week. Now I am worn out. Today I feel like I can sleep all day

Mark
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HALF2EAT's Photo HALF2EAT Posts: 253
5/15/12 11:38 A

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Hey gang,
I apologize for not being on here nearly enough. I will change the settings so I can see when someone posts to our site as well. How are you feeling today?

Erin

Make it a Great Day!!
erin :)
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5/14/12 10:05 A

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Had a very busy weekend. Dad voluntared me into making the corsages to give to the ladies on Sunday at Church and his Music Recital. And also to make food for the Brunch after church. I also made a special dinner for Mom on Sunday.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/8/12 2:14 P

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That is great that you are on the "right" medicines now. And that with the new hip you are able to do more. I have been there, like you, that I could not get out of the bed or off the couch. It was a bad time. But medicines and exercise helped me a lot. I still have major fatigue days where I have to take 3 hour naps during the day.but that never seems to affect my sleeping at night. What did affect my sleep was that the pain in my hips and back would wake me up. The doctor finally prescribed Hydrocodone for me to take at bed time so I could sleep. A lot of people have the problem that it keeps them up, but that does not affect me. It helps me to get a good nights sleep.

If all you can do is 5-10 minutes that is doing good at first. When I first started walking that is about all I could do. But it slowly gets better.

Mark
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NATVALI's Photo NATVALI Posts: 12
5/8/12 1:58 A

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I'm finding it easier to keep moving now that the pain is easing up. After much trial and error I think I'm on a medicine that actually keeps my AS at bay, but this has been recent. Before that my hip pain was too bad to be up more than a couple minutes. And last year my other hip was so bad I lived on my couch and needed a wheelchair to get to my dr. appointments. Couldn't even sleep in bed because it hurt so bad to lay flat. Those were my true no-bility days!

But with a new right hip and a new right medicine I am finally walking again. Right now I can still only walk between 5-10 minutes before my lower back hurts too bad. But that is a huge improvement! Now that I can stand long enough I can also cook quick meals and depend less on my husband bringing home fast food.

Fatigue is a major pain still. Just when I finally start sleeping normal hours it jumps in and throws everything off. Yesterday evening I just had to sleep for a few hours, so then I was up much of the night. I am also anemic. Doesn't help. Sometimes I sleep a lot of the day and still sleep all night!

I'm on my way :-)


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5/7/12 9:20 A

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Well. Yesterday the fatigue started to kick in. I seem to feel that it is going to be a bad day as soon as I woke up. Today I have the same feeling. Sigh!

I have moved to my parents house. They are getting up in the years and needed help. Since my step kids are adults now they are no longer needing me. And the wife has not wanted me around for years. So it was a good move for me and I am now able to have someone need me again.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/6/12 12:37 P

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Hi NATVALI,

You are right in that this group is not very active. We need to change that. The Downs with AS can be very discouraging, especially when you have family members that just do not understand what you are going through. On of the keys to losing weight with AS is to keep moving. Even if you are having a bad day make sure to at least go for a short walk. I fought with my doctor about this for years because I claimed it just made me hurt more. But after I got into it I discovered that after a time I noticed my pain level was decreased because I kept moving. So now I try to do my exercises or at least walk every day. You need to fight through those no-bility days (I love your term for that).

Fatigue is one of AS's silent attacks that most people think you are just being lazy. Have your doctors test you for any kind of Anemia. Some of us like Myself and Erin have B12 deffesencies (sp). Other might have other types of anemia. It is something that we all struggle through and have to work through. I know it is frustrating.

Mark
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NATVALI's Photo NATVALI Posts: 12
5/5/12 9:45 P

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Hi, I'm new to the team. wondering if this team still has active spark people since the posts are not so recent. I have ankylosing spondylitis and my husband has depression, and both of these things make it harder to lose weight or even maintain weight lost.

The most challenging part of A.S. to me is the ups and downs of it all. Okay, maybe just the downs, lol. But seriously, when I feel like it's heading toward remission and then it suddenly changes directions... that's the worst part.... that's just plain depressing. It's like handing a kid an ice cream cone and then waiting til just before it reaches their mouth before grabbing it back. I guess what I'm trying to say is that more than anything I hate the false hope.

I can deal with the fact that sometimes my mobility is no-bility, and I seem to deal with the pain when I need to, but I sure wish my AS could give me some sort of schedule of events. Like, I'm planning a flare up to start early April, within a month you'll no longer be able to work.. or, I'll be especially aggressive next fall so cancel that trip and buy a wheel chair.

Sometimes it really does feel like there is a persona attached to AS. On my worst days I find myself saying, stop attacking me! It's almost like maybe it hurts me more when it's in a bad mood or having a bad day. LOL maybe this is just me wishing there was some explanation to why and when it changes it's course.

Anyway, like I haven't rambled long enough, my AS seems to be "tired" lately, so I have been moving a little better, not great, but better than before. I don't know how long it's gonna go like this, but I plan use this time to lose the weight again, maybe even more weight than before. That would sure please my rheumatologist.

So, whose with me? Anyone there???

I'm on my way :-)


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1/10/12 12:39 P

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Having problems with fatigue since I got home. All I want to do is sleep. Oh well! I need to recuperate form the trip.

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
1/6/12 2:08 P

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I have been at my Dad and Mom's house since New Years. Just now got the chance to get to the computer. Dad had spent Christmas in the Hospital with pneumonia. I am her to help in recover. He is doing a lot better now.

Mark
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JOANNAATKINSON's Photo JOANNAATKINSON Posts: 11
1/4/12 9:26 A

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Happy New Year to everyone! I am off to an ok start this year - I have been off work (I am a retail manager - not the best career for AS) for almost three weeks. I have been using the time to focus on exercise and rest, since I haven't been consistent with either due to pain and fatigue. Anyway, now I have some sort of pinched nerve somewhere in my back or hip. Ugh! I thought exercise would help AS - not make it worse!!! haha... story of my life! I moved up my next remicade infusion and am doing a short run of prednisone. Hopefully all that will help without derailing my progress!


~joanna


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KHELIA's Photo KHELIA SparkPoints: (5,044)
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1/2/12 6:44 P

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Hi to you all! So its the 2.nd day of the new year and i wish you all good luck and lot of painfree time!
Glad to hear youre on enbrel again Mark. Hope it does its work.
I have to report better things too. First ive been much in trouble beause i couldnt have remicade as i wanted. Some other health problem showed up and ive got to see another specialist first.
But i can walk again!! Not so far as i wish, but farer and faster the alle the last year.
There was a simple trick. My phlebologist prescribed me a pair of compression stockings cause of my veins.
They work like a permanent physiotape. My achilles and my plantar-fascitiis have improved alot during the last four weeks! Im so happy - i cant tell you.
I made a one-day-trip to London two weeks ago and walked all day - and it was fine. Yahooooooo....

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12/27/11 9:21 P

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Ok, so the holidays are just about over...well, New Year's Eve is ahead of us still. How is everyone feeling?
Although I am feeling extra tired today, I did go out for a walk. Although I had three gluten free cookies when I should have had just one, at least I did not have more!
Best to you all, and a happy New Year.
Best,
E.W.

~ Emma Woodhouse


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
11/29/11 9:28 A

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Hi all

Mark
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
11/27/11 9:58 A

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I have been on Enbrel for four months now. Had an appointment with the Rheumotologist two weeks ago and he showed me that my stiffness is greatly improved. Before I started the Enbrel when he had me stand against a wall with my heals and should blades against the wall, my head was 1 1/2 hands from the wall. Two weeks ago it was only one hand away from the wall. I was talking to him about the pain and asked if I should change NSAIDS and he said the pain was beyond what NSAIDS would help with so I am now taking Vicodin at night so I can sleep through the night without pain.

Mark
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JOANNAATKINSON's Photo JOANNAATKINSON Posts: 11
11/13/11 4:56 P

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I have had terrible problems with my feet, and that pain was the first real "prounouncement" of my AS. I developed posterior tibial tendon dysfunction and had a talo-nav fusion. I have also had to have several cortisone and other anti-inflammatory injections over the past several years, in an effort to avoid more surgery. I haven't tried (or heard of) the medicine you suggested, but I did recently start remicade. I still take etodolac twice a day, but with remicade, the pain in my feet is manageable.

I just wish my drs had realized it was AS before I had done the surgery. I suspect if I had tried a TNF several years ago, I may not have needed the fusion.

On another note, I see that you swim frequently. That really seemed to help the pain in my feet and allowed me to stretch and remain flexible. You reminded me of that - I may just have to plan on hitting the pool this week!

Edited by: JOANNAATKINSON at: 11/13/2011 (16:58)
~joanna


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
11/1/11 4:33 P

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Hi Guys

Mark
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BLUEFISH2's Photo BLUEFISH2 Posts: 3,876
10/3/11 8:13 P

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Thanks for responding BE. My insurance company decided not to pay for the drug my doctor prescribed and they would only approve another, cheaper, TNF blocker Humira. I injected it for the first time last Tues. So far no relief and the pain has been intense. It did, however, manage to compromise my immune system so I have a very painful ear infection and will be out of the pool (how I exercise) for another week. I'm bummed :-(

Be who you are and say what you feel because those who mind don't matter and those that matter don't mind. - Dr. Seuss



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BECSCOTT's Photo BECSCOTT Posts: 176
10/3/11 9:53 A

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Hello sorry BlueFish2 I can't help with your medication as I don't have that particular problem. I have just been prescribed Endep and Lyrica for my symptoms.

Be as kind to yourself as you are to others


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BLUEFISH2's Photo BLUEFISH2 Posts: 3,876
9/16/11 9:00 P

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I'm not sure if this is the right place to ask this but I was wondering if anyone here with AS has plantar fasciitis or trouble with their feet and ankles. I have an atypical presentation of AS and my main pain is in my feet and ankles. Another question: my doctor wants to start me on Simponi. Anyone else tried this med? Thanks so much. I am newly diagnosed and still learning.

Be who you are and say what you feel because those who mind don't matter and those that matter don't mind. - Dr. Seuss



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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
9/6/11 3:25 P

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Well, Had a good weekend, It was busy on Saturday as we went and did a lot of shopping. Rest the weekend I just relaxed.

Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
9/1/11 8:30 A

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First, I am sorry that I have not been around. I have let my health issues drag me down. The doctor gave me a lecture last week that I have not been doing what I need to do with my exercises and that I need to be regular with them no mater how I feel. Spark People provides a great motivation and encouragement so I need to get involved again.

Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


 current weight: 199.0 
 
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