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riverrat1

Saints, Dry Eyes and other stuff.

riverrat1
12 years ago

Watching the game tonight and started thinking about all my football fans here on the CF. Packers just made the first touchdown (well deserved) just as I sit here still believing in my Saints! I hope the Saints show up tonight! So I just have to say WHOO DAT!

Does anyone else here on the CF deal with Dry Eye Syndrom? This is not a fun thing because I do not like my glasses and my eyes burn constantly. Soooo, of course, I waited untilmy annual exam to let the Doc know what was going on.

After my examination the Doc told me that I have one of the worst cases of Dry Eye Syndrom that he has ever seen. ~Sigh~ "Of course" I thought. No wonder my contacts were popping out my eyes! I've change my contacts to the newest and greatest contacts on the market for dry eyes...I can still only wear contacts for 4/6 hours and then they must get the he!! out of my eyes! Steroids and Restasis are helping a bit agter two months. Anyone else dealing with this?

As many of you know we had our 3rd Grandchild in April. Lette was born at 31 weeks gestation and had major medical problems. She was an identical twin that was lost at 4 months gestation. So Mom had to carry Lette as long as she could to 31 weeks. Lette has had 4 major surgeries and stayed in the hospital for over 4 months. She is finally home with Mom and Dad and now weighs a whopping 7 lbs. at 4 1/2 months old. She is adorable and reminds me of Cindy Lou Hoo from the Dr. Seuss books. Big ol eyes and the sweetest smile you could ask for. We will be going to see her in a few weeks. I wish that they lived closer than a plane ride but we try to see them as much as possible. I'm so blessed to have all the blessings in my life and thank God that Lette is healthy so far. She will always have digestive issues...but I'll take the poop all day long just to have her here with us! LOL! So I'll included in this post pictures of my Maggie, Max and Lette. Hope you guys enjoy as much as I do! ;-) I keep my Max 2 or 3 days a week and my Maggie has just entered Kindergarden. ;-( Max is the biggest snugglebug ever and Maggie is as sweet as her mother was as a young girl.

My Lette, Miss Cindy Lou Whoo!

My Max on the beach!

My Maggie last Easter!

Comments (23)

  • doucanoe
    12 years ago
    last modified: 9 years ago

    Oh, Karen....those kids are so darn cute! Hard to believe Maggie is in kindergarten already! Seems like just yesterday we were all celebrating her birth! Max is a cutie too and so is little Lette! Glad she is doing so well in spite of her obstacles.

    Not a football fan, so I'll let the others chime in there. LOL

    I have dry eye syndrome, too. A complication of my RA. But mine isn't as bad as yours seems to be. I ditched the contacts years ago for Lasik and it was the best money I ever spent! If it is something that you are a candidate for, I would recommend looking into it. Other than that....good eyedrops and learning to live with it is all I can offer up as advice.

    My Rheumie just added a drug called Plaquenil to my treatment plan for RA. Two weeks on it and I am not going to take it anymore. I can't believe the side effects I am experiencing....nausea, headache, tinnitus, insomnia, and the weirdest freakin' dreams I have ever had! Yep...not taking it ever again!

    Hope you find a happy medium for your eye issues. Ain't this growing old stuff for the birds?

    G'night....Linda

  • mustangs81
    12 years ago
    last modified: 9 years ago

    Darn Sis, I didn't know about the DES! That doesn't sound like fun.

    Thanks for sharing the pictures; you know I love to see those babies. I'm glad Lette is finally home.

    Hey, we need another road trip; nothing better than two grammys talking baby talk for 8 hours.

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  • Gina_W
    12 years ago
    last modified: 9 years ago

    Hi Karen! The grands are adorable.

    I had some intermittent bouts of dry eyes during menopause, which is common. I got Systane Ultra drops from Amazon and they helped the discomfort. However, if you have chronic dry eye, I would try to find an underlying issue. Iodine deficiency is one. Because many of us started using alternative salts in cooking, we may not be getting enough iodine. Do you also have any other symptoms such as dry mouth or fatigue?

  • compumom
    12 years ago
    last modified: 9 years ago

    Oh Karen, thanks for updating us on darling Lette! She's growing and with that Soothie and her big eyes, she's adorable!
    Max looks so much like you and Maggie, he's a cutie pie and Miss Maggie is too! Time is flying, isn't it?

    I'm sorry to hear about your eyes, I hope they feel better after some more treatment. What's interesting is that google ad for Sjogen's Syndrome popped up when I was reading your message on the iPad. Could it possibly have some involvement?
    Gina brings up an interesting point about our lack of iodine, but I think if we're eating shellfish and live near a coast, it's less of a problem.
    Hugs to you and smooches to the babies!

  • triciae
    12 years ago
    last modified: 9 years ago

    Karen, the grandbabies are adorable! I'm glad Lette is finally home. She looks like she's thriving. Max & Maggie have really grown since the last pictures I remember. Enjoy then, they grow so fast.

    I've got Sjogren's. Dry eyes is an early indicator as is dry mouth. It's an autoimmune disease & is often seen with Lupus but it can also be present without Lupus. Then, it's known as primary Sjogren's. I would recommend asking your primary care doctor for a simple blood test.

    I have Eye Plugs to help with the dry eyes. They are little gadgets installed by your eye doctor that work like a kitchen sink stopper to retain as many tears as possible. Nifty things & help many considerably although not all. Takes only a couple minutes to install & is painless. I still need eye drops but not as often.

    Other symptoms include persistent fatigue, muscle/joint pain, neurological pain, "brain fog", poor sleep (either can't get to sleep or can't stay asleep), and/or depression. There are a bunch more symptoms but it's usually the dry mouth/eyes that gets people to the doctor to see what's wrong. It's a very slowly progressive thing. Have your dry eyes been getting worse over an extended period of time? Also, not every person with Sjogren's exhibits all symptoms at the same time. Some never develop all the symptoms. In my case, dry eyes is the least bothersome but very much present. My eye doctor worries about it more than I do.

    Linda, I've been taking Plaquenil for years. It does have some disconcerting side-effects. For some, they are intolerable. Also, it takes several months to see if Plaquenil will be effective so it's hard to have the side-effects & see no improvement in the beginning. Ultimately, I decided to stick it out & the drug has helped reduce my fevers. It also seemed to have lowered my SED rate but now I'm taking other additional meds that also could be contributing to getting it down to the low 50s. Still high but better than it was. I'm sorry the side-effects are intolerable (and they certainly are for many people) 'cause the drug has proven beneficial for many over a longer haul. I do have to get regular eye exams as I'm sure your doctor explained. Good luck, hope you are feeling pretty good. My son has RA.

    Karen, here's a link to the Sjogren's Foundation - take a look & see if anything strikes you as familar. Enjoy those cute grandbabies.

    /tricia

    Here is a link that might be useful: Sjogren's Foundation

  • cloudy_christine
    12 years ago
    last modified: 9 years ago

    Those kids are adorable. Maggie is so grown-up already, and Max is so dear. And Lette -- it looks like she may have the same wonderful eyes Max has. Welcome home, Lette.
    A few weeks ago, in a waiting room, I met an adorable 17-month-old toddler. Her Dad told me that she'd been born three months early! There was no sign of it, she seemed really caught up, and like any other kid. I am very familiar with that age, because my granddaughter just turned two.

    What are those contacts that are best for dry eyes? I have hard lenses, but no special ones.

    Good to hear from you again!

    Karen

  • dedtired
    12 years ago
    last modified: 9 years ago

    Oh, the kids are too cute. I am so glad Lette is doing well. They all are beautiful children.

    I could never adjust to hard lenses because my eyes don't make enough tears. Soft lenses never corrected my vision very well, so I have worn my glasses all my life -- well, since age 10. I looked into Lasik surgery when it was fairly new in the US, but chickened out. I'm sorry I didn't do it. Now I have to have a cataract removed and the doctor said I will not need glasses after that. It will certainly be odd not to wear glasses after all these years.

    Good luck with the dry eyes. It sure sounds like you are doing everything there is to be done.

  • wizardnm
    12 years ago
    last modified: 9 years ago

    Hi Karen! I'm not into football, so can't comment on that. But I am into cute kids and love seeing you pic's. Glad to hear Lette is doing well. Dam...those kids are cute!!!!!
    No dry eyes here, it doesn't sound like much fun.

    Nancy

  • jessyf
    12 years ago
    last modified: 9 years ago

    I take full responsibility for the Saints losing because I forgot to wear the Saints t-shirt you got me. I'll fix that....dowloading the Saints schedule onto Google Calendar!

    Those grands are adorable. Glad to hear Lette is with us!

  • cocaty
    12 years ago
    last modified: 9 years ago

    Karen, I'm curious what contacts your doctor recommended for dry eyes. ( though honestly - as long as you can see those adorable grandchildren I don't imagine it really matters whether it is contacts or glasses).

  • riverrat1
    Original Author
    12 years ago
    last modified: 9 years ago

    Thank you all! I'm tearing up because of all the concern and of all the beautiful things you have said about my Grands. They are the shine in my eyes...or is it just this dry eye syndrome? LOL!

    Linda, I know that you have gone through so much with your RA. I don't think that is going on with me although I do have advanced regular (OSTEO) arthritis in my thumbs, spine and hips. I guess I need a good work blood work up. Also, my eyesight is still changing so I'm not a candidate for Lasik. Doc tells me that I have had 3 eye reviews in two years and that my prescription has changed each time. Now I need to wait until my eyes stop changing before I can have Lasik. Thank you sweetie for all the info.

    Tricia, Thank you for the link to the Sjogrens Website. I have many of the symptoms that the website talks about. I will need to do a little research and have bloodwork drawn. Thank you so much for linking that site. I'll let you know once I have the tests that need to be done. I'm still in awe of the information that can be collected from all of you on the CF. Thank You all!

    Gina and Jessica, I live in the South, and cook with salt, and I'm sure that I get enough iodine. But will check just to be sure. Thank you! ;-) And, um, Jessica, get that calendar in order. It looks like the Saints are gonna need alot of t-shirt wearing!

    Gina, I do have alot of fatigue. It hits like a door shutting on me. I just thought that I needed a nap!

    Cathy, I need another road trip with you...Love you lot's.

    Cloudy and cocaty, the newest and best contacts are called "Safigel". My Doc swears by them and he wears them when he plays golf so he can see better.?.? He hates glasses about as much as I do. These are a throw away contacts after a day. ~sigh~ about a buck and 30 cents a day...but if they work I'll be happy. I had a contact review at the Docs today and he says they are fitting well. This is my last resort as far as contacts are concerned.

    Aren't my babies adorable?!?! They really are the shine in my dry eye!

  • coconut_nj
    12 years ago
    last modified: 9 years ago

    Oh Karen, your grands are beautiful. Each of them. Lucky you. Smiles.

    The Saints....yeah.. Jessy better wear that shirt round the clock. I can't believe with their brand new defense that their defense was soooo bad. Pretty pitiful. But, as diehards... Who Dat. We still hope.

  • mboston_gw
    12 years ago
    last modified: 9 years ago

    Riverrat - I too have Dry Eyes and like Triciae said Dry Mouth. I use the Systane Eye Drops. I have been told that Lasik is not good for anyone who already has dry eyes as it makes it worse. I can't stand anything in my eyes so contacts are out soI am stuck with glasses. Some people say to use baby shampoo on your eye lids (of course it is on a wet washcloth). I'm not sure what that does. Keeping hydrated is very important, I have found that out for oth eyes and mouth.

    The Dry mouth is presenting more problems for me than the eyes. I have had to have 4 crowns done in the last year and I am very faithful about keeping my dental checkups. I have had the blood work done and it did not come back positive for Sjogren's or RA but I wouldn't be surprised if it doesn't in the future. I have had frozen shoulders and some joint issues in my knees but not to the point that I can't excerise 4 days a week. Also some weird swelling issues - an allergic reaction to something -never could id what was the cause of it.

    Triciae - I think we have discussed Sjogren's before o this forum. You know that Venus Williams just announced that she has been diagnosed with it. Maybe someone with her money/clout will help with research on it.

    Your grands are adorable - isn't having grands just the best thing in the world?

  • riverrat1
    Original Author
    12 years ago
    last modified: 9 years ago

    This may sound like a really weird question but here goes. How do you know if you truly have dry mouth? I remember some time ago (6 months) that I had shedding of the skin inside my cheeks and lips. I thought it was because I changed mouth wash. I drink a fair amount of water everyday seeing that is my favorite beverage. I also had some ulcers on the inside of my upper gums around the same time. I have so many implants and crowns that I forget how many. I'm thinking that my joint pain is just osteo arthritis and really don't take much for it. I'm one of those that let's everything get to the brink before I have it checked out. So, I've had blood work drawn and will find out Monday what the results are. I am tired alot...

    About 2 years ago I had what the eye Doc called "Dandruff" of the upper lids. EWWW! His recommendation at that time was to scrub the skin around the eyes with baby shampoo. Soon enough the dandruff was gone.

    Thanks everyone! I'm glad that I asked about dry eye...

  • triciae
    12 years ago
    last modified: 9 years ago

    Hi Karen, this is going to be a bit long but please bear with me 'cause early Sjogren's is sneaky & I'd like to give you a reasonably comprehensive overlook. I'll start with Dry Eyes & Dry Mouth 'cause they are hallmarks of Sjogren's.

    Dry Mouth -

    Even as a teenager, I remember always having a drink with me although I don't exactly remember why. Never went to the store, never went on a date, etc. without that drink. It was a part of me. It wasn't as if I felt urgent need to hydrate myself. Just always this desire for frequent small sips. That continued for the next 30 years but didn't get any worse. About 6 years ago, it became uncomfortable enough I started mentioning it first to DH. "Gosh, my mouth feels like cotton balls!" Soon, it was bothering me enough I mentioned it to my primary care doctor. I was taking Flexeril at the time for a spinal injury & my PC doctor just shrugged the dry mouth off as a side affect. Now, it's so dry it bleeds. Mouth sores - yes. Dry lips - yes. Blisters - yes. The dry mouth has progressed to now being nearly impossible to deal with but that has taken decades to reach this point.

    Dry Eyes -

    My eyes have sorta "itched" for several decades. I never thought much about it. I've had eye infections over the years also but they were far enough apart I didn't think to mention it to a doctor when a new one turned up. Dry eyes have not been my primary focus with Sjogren's but they are now dry enough my opthomologist pretty much insisted I have the Eye Plugs inserted. They've helped, a lot. I still need drops. Eye lid infections - yes. Sores in the corners of my eyes - yes.

    Swallowing, Talking, Choking -

    My Sjogren's has progressed to where I can hardly talk anymore. I also have trouble chewing & swallowing. Many foods are impossible for me to eat. My diet has changed dramatically in the past 3 years. I also choke - especially on pills but also just trying to eat a meal. At night, my throat swells & sticks together blocking off my air. I wake up in a panic reaching for water.

    Dry Skin -

    Again, for as long as I can remember I've had dry skin. I'd go through gallons of lotion. Now, I use prescription stuff that really helps.

    Fatigue -

    Gosh, just thought I was "weird" & a bit unlike my friends. I never had a curfew as a kid. Mom knew I couldn't stay up late enough to need a curfew. She was right. Sometimes, I would fall asleep practicing with my chin on my accordion. Again though - nothing that seemed like a trip to the doctor was necessary. I will say though that the fatigue was complete. Sometimes, it felt like lifting my arms to brush my hair was impossible.

    Muscle/Joint Pain -

    Today "this" hurts, yesterday "that" hurt. Everyday, somewhere else hurt. The pain would last for a day or weeks & then disappear just as mysteriously as it had arrived. I thought it must be "normal" & I was just a wimp. I was diagnosed with fibromyalgia at some point & from then forward whenever something hurt doctors would just shake their head & use that diagnosis as explanation for my pain. Many times the pain was unbearable. I once overdosed on aspirin trying to get relief. That episode resulted in more blood work. Negative for everything. The pain though continued.

    In my mid-40s, I had an extensive & unusual spinal surgery to correct a rare injury. The surgery almost did me in. After that surgery, doctors blamed the surgery every time I burped. I should note that I've had 13 major surgeries for "unusual" stuff.

    Fevers -

    I have a history of spontaneously running a fever. Fine one minute. Poof, next minute...I've got a fever of 101+ degrees. An hour later, I'm fine.

    Nightsweats -

    I've had then for decades. Always associated them with some cancers (I'm also a multiple cancer survivor) so I was afraid to mention them to my doctors. But, my fear didn't make them go away. Still have them. Still haven't told my doctors.

    Heart Palpitations -

    Ended up in ER. Diagnosed with "Anxiety Attacks". Nope. Sjogren's.

    Sensitive to Temperature Changes -

    I'm either cold or hot. There's only about a 5-8 degree range I'm really comfortable. It's not just chilly or a bit warm either. I'm either shaking from cold or in ER from heat stroke. So, we keep our house even temperature year around. Sometimes, cost isn't everything.

    Dental -

    Gosh, where to begin? Let's just say I fought a good fight but just a couple years ago I said, "ENOUGH! I can't tolerate this anymore. Pull them out, every single one - NOW! I'm not leaving this office until they are gone." Even implants would not stay in my jaws. I've pulled two that were erupting from my jaw by hand in the middle of the night to stop the pain. Now, I've got dentures (should have done that years ago!) but my mouth is so dry my tongue sticks like glue to the dentures & bleeds when I try to move it. Ugh.

    Neuro Pain -

    This is now a serious problem. I have no feeling at all in my legs/feet. Seriously, I can't feel the floor or anything else. Sharp pins/needles type pain virtually constantly.

    Stress -

    I had a garden accident July '09 & re-injured my spine around the surgical area (right between the shoulder blades). My back surgery had been so "unusual" a hotdog surgeon was brought in from Arizona. He published a "White Paper" on me that lives for eternity in medical journals along with the video they took of the the entire surgery. Anyway, the re-injury hurt so bad I had a stroke. Yep, I met the definition of "stressed" there for awhile.

    As I started to settle down from this little incident I noticed that my mouth was drier, my eyes were drier, my muscles/joint pain was worse, the fevers were more frequent, etc., etc., etc.

    I could go on with other symptoms but I think that's enough for you to get an idea of Sjogren's. Eventually, I found a doctor that treated me as a whole patient & didn't just look at the reason I'd written down for that particular appointment. It led to my diagnosis for both Lupus & Sjogren's.

    A word about the bloodwork is in order here, I think.

    I'd had these tests multiple times before - always negative. Many doctors said, "Tricia, I "think" you've got Lupus but your tests don't bear confirmation of that diagnosis." One even prescribed Placquenil & my fevers virtually disappeared. Unfortunately, that doctor left the practice & his replacement didn't believe my tests justified the risks of Placquenil. The fevers returned within a few short months.

    Anyway, my current primary care doctor redid the bloodwork yet again. This time, I was positive for both Lupus & Sjogren's. It tooks decades for those tests to turn positive.

    My last SS-A test results were 2.78. Positive.

    My SS-B test results were 3.25. Positive.

    Also, Sjogren's patients often show Vitamin D deficiency. I'm almost always testing deficient & take 50,000 mgs once/week for 4-8 weeks then off for a bit until we test again then back on for another 4-8 weeks.

    You will also, most likely, have an abnormally high SED rate. It will vary if you're having a Sjogren's "flare". BTW, that's the best time to make the doctor's appointment - when you feel awful, like you can't drag yourself anywhere.

    I'd recommend finding a doctor that will treat ALL of your symptoms. Treat you as a whole person with this variety of things happening that may seem unrelated, to you. Tell your doctor every little thing.

    Sjogren's is SYSTEMIC. It affects your whole body. Yes, there are specific markers like the dry eyes/mouth thing but many Sjogren's symptoms mimic other diseases. Diagnosis is often overlooked both due to doctor indifference & lack of persistence in patients.

    There is no defined Sjogren's protocol for treatment. It's a "treat it as it appears" approach for most doctors. (bummer) But, a protocol is being developed now & the goal is that it will be available to doctors in 5 years (I know, sounds like an eternity but, like breast cancer, you have to start somewhere).

    I've recently been excepted at John Hopkins. They have a specific Sjogren's department & a doctor heading that clinic who has chosen Sjogren's as his life work. My first appointment is October 18. I've received volumes of "stuff" from John Hopkins regarding my appointment that will be two full days. I'm got appointments for about a dozen specialized tests. I've got advanced Sjogren's & frankly feel just about defeated. After 50+ years, it's taken a toll. But, I accomplished a lot with my life - Sjogren's be damned.

    I don't know if my disease process will help you identify what you're experiencing, or not. But, don't ignore your symptoms. If they sound like they could be Sjogren's - be persistent. Just know that it will be a journey to diagnosis. Not a short sprint. Since getting me as a patient my PC doctor has been able to make a diagnosis on another women for Sjogren's. She's thanked me saying she would have overlooked the clues had it not been for having me as a patient. We're learned together about Sjogren's. So, doctors are becoming more aware & Venus Williams' diagnosis, hopefully, will also draw more attention to this autoimmune disease.

    mboston, don't give up. If your gut feeling is correct (and, IMO, our bodies usually tell us the truth) then you'll need to stay in your doctor's face until you get a blood test that pops positive. That can be illusive. If you're having a flare...make an appointment. Tell the receptionist that next week is not OK...you need an appointment tomorrow!

    /tricia

  • Gina_W
    12 years ago
    last modified: 9 years ago

    I read that you can be getting iodine but your thyroid not using it, something to that effect. Anyway, thyroid issues are extremely complicated, more than I ever imagined. I hope your dry eyes and fatigue are just simple and not tied to anything serious, but do have a specialist (endocrinologist? - Tricia would know) check you out throughly.

    I've been taking D3 10,000 IU per day, and B-12 2500mcg also. I'm also getting sun when I can and having DH do the same. Seems many of us have issues related to not enough sunlight, including myopia in children, and of course bone issues. We are so afraid of the sun we are doing damage to ourselves in ways we never imagined. Anyway, I am digressing big time!

  • mboston_gw
    12 years ago
    last modified: 9 years ago

    Triciae - I am so sorry to hear of all the pain you have had to go through to this point. Believe me - I by no means have any reason to complain. I do fear that there maybe some specific cause to what has happened over the last few years but I can function in all aspects of my life right now. I never really had childhood problems except for kidney issues, which resolved itslef as I grew up. I had fertility issues that led to an early hysterectomy at the age of 36. My dental issues are my main concern right now - I had to have a tooth pulled because the cavity was above the gum line and had occurred quickly - within 6 months as I go faithfully 2 times a year. Also had to have a crown redone and another one is being put on tomorrow morning. Another one to go after that. My teeth have never been strong - no real dental care as a child. So my mouth is full of metal. Actually the suregon who pulled the molar told me he thought I was actually having what he called a Galvanic reaction to all the metal in my mouth. He says it causes a tiny electrical current that keeps the mouth irritated, worsens the dry mouth and allows bacteria to multiply. Every other dentist, oral suregon and physicians (ENT, Gastro, Allergist and PCP) said it was Geographical Mouth. Anyway, the bout with mouth sores lasted about 5 months and since then I will occasionally get a spot or two. I don't need the Biotene as often but if I feel an irritation coming on I will use it or the RX the doctor gave me. I will definitely be aware of new symptoms and pursue them with my doctor. If my mouth gets bad again with sores, my dentist has offered me a referral to the University of Florida Dental School, which is associated with Shands Teaching Hospial.

    Thank you for sharing your experiences. I wish you
    luck with your upcoming doctor appointments at John Hopkins. Hopefully he will be able to help you have more "great" days than "bad". Keep in touch.

  • riverrat1
    Original Author
    12 years ago
    last modified: 9 years ago

    Again, I thank you ALL for the information you have given me. Tricia, you have been through so much in your lifetime that I respect and understand all that you wrote. I thank you for all the information that you gave me. All of you have ben a tremdous help to me. And to think I was complaining of dry eye! :-)
    I have had ALOT of health issues in the last 5/6 years. I went to see a Rheumy Doc because I had, feverish, inflamed fingers (only 3) and she ended up telling me I had vascular issues and that I need a Cario Doc immediately. BP was 230/ 210. Stoke BP! I then went on a trip to Florida with our own Cathy (mustangs) to see Janet that was dying from Pancreatic Cancer. When I got home I saw a Cardiologist. He could feel pulse in my feet! Yay! A good sign. Then he insisted that I have a full work up with ultrasound of my legs (because they hurt) . Test came back that something was wrong. Remember, that they could still feel pulses in my feet. I then had an angiogram that showed my Aorta in my belly was 100% occulted. The reason that they could feel pulses in my feet was because my body had made soooo many natural bypasses that my feet were still getting circulation and blood to them. So, off I go to have an Aortic Bifemoral bypass, 1 year later, a Colectomy that resulted in a huge operation that took out 3 feet of colon along with a 6 sontometer polyp. The Docs say it had been growing since I was in my early twenty's. Anyway, a 3 sonometer polyp is considered to be cancerous. I was put on the Oncology floor, after the surgery because they were sure I had cancer of the colon. Nope, I beat that! No Cancer. But, they tell me that it was 3-6 months of turning into cancer. 3 weeks later I threw a blood clot into my left femoral bypass in my groin. ICU for 3 days with Thrombosis therapy. 2 years later I threw another clot in the same place. ICU with thrombosis therapy and a stent. I then bled out in ICU. Had to have 6 units of blood and emergency intervention to take the catheter out. Thank goodness the clot had already dissolved.

    I've had numerous breast biopsies’ that have all been clear to this point. More to come on that later...
    So, I'm not in the best of health but I feel pretty good considering. I do have a lot of joint pain and leg pain. Docs tell me to walk on the treadmill more...I do but I'm tired after 5 years of walking and my legs still hurt. I do have times when I go to the massage therapist to put my hip back into its socket. I just pops out at random times.
    I take lots of extra Vitamin B and D because I was told that I had a Vitamin B difencincy. I take the extra vitamin D because of Osto Arthritis. I’m also on Plavix and aspirin 2 times a day, BP medication and more vitamins.

    I use Biotin mouthwash and Scope interchangeably.
    My blood work came back today and all is well except for one level that I didn't ask for. It's kind of strange but I asked for the C-125 ? For Ovarian/Uterine issues. The nurse got confused and ordered a C13-5 ?(I think that is what it was) and it came back elevated at twice what the normal limit should be. That is the blood test they do for breast cancer. I'm told today that I immediately need to have another Mammo and a PET scan of my breast. I'm leaving to go to Pensacola for a silent retreat on Thursday morning. So will do all of this when I get back.

    Thank you all for all of your insight, information and thoughts. I have a spread sheet of everything that has been going on with me...LOL! Will let you all know when I know something. I'm sure that nothing is really wrong but what you all have told me makes me think of all the health issues I've had over the last 6 years.

    Thank you all.

  • jessyf
    12 years ago
    last modified: 9 years ago

    ((((hugs))))

  • compumom
    12 years ago
    last modified: 9 years ago

    Oh Karen, sending you a giant hug and clear positive thoughts!
    xo
    E

  • triciae
    12 years ago
    last modified: 9 years ago

    Karen,

    I've just been sitting here reading & re-reading your post. I am so sorry. Not only for the illness, suffering, pain you've endured; but also because I know/understand how difficult it is to go to bed at night laying there wondering what's wrong. Your body tells you there's a problem but what is it? Stress from that alone can cause illness, I'm convinced.

    In our medical system today the routine is to send people to specialists for just about anything other than a cold. IMO, this practice makes it very difficult for a PC doctor to see the "whole" patient. Every specialist looks for & treats symptoms within their realm of expertise. Nobody looks to see if there's a connection happening unnoticed.

    Bless You, Karen. You'll be in my prayers. I'm Christian. I don't believe in coincidences. It wasn't a coincidence when I first got the sudden urge to Google a weird autoimmune disease I'd read mentioned in a short paragraph about Lupus & it isn't a coincidence you have results from a blood test you didn't know was being done. Wherever it leads you we'll all be here...you're a strong women but, sometimes, it's nice to know others are rooting for you.

    /tricia

  • Gina_W
    12 years ago
    last modified: 9 years ago

    Hugs to you Karen!

    Tricia, I hope the doc you see at JH does something good for you - I'll keep my fingers crossed for you. JH is where my brother went to take care of his hydrocephalis - the common treatment is a shunt, which comes with its own maintenance problems, but the doc he saw was able to do a new treatment requiring no maintenance or followups. So far so good with that.

  • annie1992
    12 years ago
    last modified: 9 years ago

    Oh dear, karen, I'm sorry to hear of all those health problems and you'll be in my prayers. What a lucky thing that they ran the "wrong" test! My eyes are dry since I started menopause but I wear hard gas permeable contact lenses and my eye doc says that since I'm able to wear them they are actually better than the disposables, so I'll stick with them, but I've gotten to the point where I wear them 8 or 10 hours a day instead of 12 or 14 hours. Ah well.....

    I'll be thinking good healthy thoughts for you.

    Oh, and the babies are adorable, I can't believe Maggie is so big. (sigh) She's just a year younger than Bud. Lette DOES look like Cindy Lou Who, what a doll. And Max is at least young enough to still be at home and not go to school, thank goodness!

    Hugs to you.

    Annie