Sorry that it's ben so long!
August 26, 2008 9:23pm
I haven't signed in for about 5 months now. My doctors down here and the one nuerologist up at the UWMC ended up having …
Progress
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SummerLaree
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About Me
SummerLaree
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About Me
I am married to a wonderful man who tries to be supportive. We have two boys together. They are 8 and 5 yrs. old. I have three step-kids also. They are 20, 18, & 15 yrs. old. We have a wonderful family, and friends, that make up a great support group! I know that it's harder on them to see me so ill, than it is on me being ill. We are very involved with our church, to the point that, I guess I would call Christ our "passion." My other passion has always been my family and friends.
I am married to a wonderful man who tries to be supportive. We have two boys together. They are 8 and 5 yrs. old. I have three step-kids also. They are 20, 18, & 15 yrs. old. We have a wonderful family, and friends, that make up a great support group! I know that it's harder on them to see me so ill, than it is on me being ill. We are very involved with our church, to the point that, I guess I would call Christ our "passion." My other passion has always been my family and friends.
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Interests
My interest are my family, friends, & church! I also like partylite candle partys, playing bunco with the ladies from church, arts and crafts, playing games, reading books, researching on the internet, traveling, visiting with others, being able to help others. I want to be able to go hiking, swimming, skiing, again also. But I really want to be able to "run, and jump, and play" with my boys again!
My interest are my family, friends, & church! I also like partylite candle partys, playing bunco with
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Recent Activity
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Journal
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Journal Entry for March 11, 2008
March 11, 2008 5:30am
I go meet with Dr. Distad (my second neurologist) up at the UWMC in just a few hours. I'm a little nervous, every time I go up there I leave with …
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Journal Entry for February 10, 2008
February 10, 2008 9:38pm
I am battling either a sinus infection or pneumonia again, or both I guess. I feel yucky. I have spent most of the day in bed today, & …
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Journal Entry for February 5, 2008
February 5, 2008 4:44am
Well, I haven't been feeling so great lately. Can't quite put my finger on "why." Is it just another "flare-up?" Or more? …
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Hugbook
Celebration
I wish you and your family a very happy New Year which is filled with better health, family, friends and much laughter!
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Present
I would like to wish you and your family a Merry Christmas which is filled with the Christmas spirit. May the new year bring health, happiness and much laughter into your lives.
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Hug
Thinking of you and I hope you're feeling okay.
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Hug
I was sorry to hear about your son and I hope the results are good for him. Hope you are feeling better. Thinking of you my friend.
Hug
Have you received the results of the culture yet?? Just wondering how your son is doing ? Hopefully he is doing some better, and the abcess doesn't require such painful treatment. Hugs....Kudzu
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Photos
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Goals
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Support Groups
Close Myasthenia Gravis
I had been sick about 2 yrs, going down hill & getting weaker by the week. My "doctor" was dumb founded. I went through tons of tests & a couple of surgeries tring to get better. Finally I woke up one morning, @ the age of 27, looked @ my husband & told him that I could not use my legs. He had to assist me everywhere. My "doctor" @ that point told me it was all in my head! I insisted on going to a specialist that (thank God) saw me and w/in min.s knew what it was. It's barely managed w/ med.s.
Treatments
- Azathioprine Somewhat Helpful
- I was on Azathioprine for about two years, along with prednisone. My GI Doctor took me off of it because of repeated pancreatitis.
- IVIG Working / Worked
- I end up having IVIGs about every 3 months on top of the other meds. Thickens my blood ALOT. But I have really bad "flare-ups" & this helps.
- Thymectomy Considering
- Going into the surgeon later for the first consult. EXCITED!
- Prednisone Working / Worked
- I have been on Prednisone for 3 years now. Never wout another med. to keep me out of a flareup Never below 10mg every other day. my usual dosage is 50mg a day. Almost every side effect possible!
- Cellcept Working / Worked
- Im on it now 2000mg a day along w prednisone. Im going in to a flareup but Im going to have a thymectomy. Side Effects hard on the wallet!
Close Homeschooling
My husband & I feel that it is important for me to homeschool our 2 boys. I am a stay at home mom (I have a disability). Sure it's EXPENSIVE, stressful, & it would be easy to quit, & let the public school system take over. But we don't agree with the schools teaching about sex-ed, homosexuals, other religions, or anti-God. They have taken on the roles of the parents. Now the kids are not learning math, reading, S.S, English, etc. that they were suppose to be teaching in the first place.
Open Chronic Pain
It started about 5 yrs. ago. I went to my Dr. to try to find out why I had all of the pain. And she told me that it must be all in my head. Come to find out I have a list of medical problems. Including fibromyalgia, & rheumatiod arthritis, but due to the myasthenia gravis, GI trouble, COPD, I can only take certain meds, but have tried several. My insurance won't pay for PT, a TENS unit, or chiropractic care. I am going to a pain management Dr. now for any relief!
Treatments
- Chiropractic Adjustment Working / Worked
- Had it after my car accidents, it worked great! Wish I could try it again.
- Flexeril Working / Worked
- It worked, but because of the myasthenia gravis I can't take it.
- Heat Working / Worked
- I do use heat, sometimes it's the only thing that helps with the pain meds.
- Hydrocodone Working / Worked
- I took it for a couple of years. It no longer works for the pain.
- Lidoderm Working / Worked
- I have used them. I don't know if I was all that impressed.
- Naproxen Working / Worked
- It worked, but it was to hard on my GI tract.
- Oxycodone Working / Worked
- I currently take Percocet & OxyContin.
- Physical Therapy Working / Worked
- I use to have Physical Therapy & it did wonders for me. I try to do some PT at home, but my insurance won't pay for anything more.
- Topamax Working / Worked
- I currently take it.
- Duragesic Patch Working / Worked
- It has been the greatest relief that I have had.
Open Fitness Goals
Type: Improve overall fitnessI have MS, Myasthenia Gravis, Rheumatiod Arthritis, Fibromyalgia, Arthritis, Chronic Pain, etc.. I am on LOTS of prednisone daily & some times get 1000mg. by IV to get out of flare-ups. Plus lots of other meds. Needless to say, I have gained about 70 lbs in the last 3 yrs. I am the heaviest I have ever been! Including 9mos pregnant. I am not suppose to walk for more than 10min @ a time or do any other work out because it would be to much on my body @ 1st. I use to be extremely active! HELP
Treatments
- Elliptical Trainer Somewhat Helpful
- We got the elliptical @ the same time that I was being diagnosed with my diseases. So I was having a hard time getting in to it with out going into flare-ups every time.
- Hiking Working / Worked
- I use to love hiking & being outdoors. It was at the same time that I was swimming & then I started Martial Arts. Felt Great!
- Kickboxing Working / Worked
- It was part of the Kajukenbo. Plus I had the Tae Bo tapes @ home that I used after my 1st son was born 9yrs ago.
- Martial Arts Working / Worked
- I was in the best shape of my life I did Kajukenbo 3-5 days a week 1-4 hrs. each day
- Slim-Fast Not Working
- I have tried & never saw a difference. Never saw where it helped. More discouraged.
- Swimming Working / Worked
- Swam alot 12-16yrs ago. Also went hiking alot. Felt great.
Open Parenting Big Kids (5-8)
I have one 5 year old (boy)& a 9 year old (boy). They are both so different in their personalities that it amazes me. I love being a mother & I hope that I don't mess them up. I have been diagnosed with a MD/auto-immune disease since the birth of our last child; so that adds more to being a mother. I try to keep their childhood as "normal" as possible even with my disease. It is hard on them though. I am getting ready for a surgery to try to get it into remission.
Treatments
Open Parenting 'Tweens (9-12)
I have a 9yr old (boy) & a 5yr old (boy). I love being a mom & I hate it when I get upset & yell at them. We camp, & play games, home school, & go to church. I have been diagnosed with a MD/auto-immune disease since the birth of our last child. That makes being a parent even more difficult at times. It's hard on the boys too! We're getting ready for me to have a surgery to try & get it in remission! Then I will be able to run, jump, & play with them again! Not just watching from my scooter.
Treatments
- Patience Working / Worked
- Not my strong suit, but I try.
