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Health Experiences - offer to help

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Old 08-06-2007, 09:38 PM   #1
Join Date: Aug 2007
Location: Oregon, USA
Posts: 2
Dottr HB User
Talking Health Experiences - offer to help

Hi My name is Dotty..

I am 38 (39 on Aug 27th), married mother of 3 daughters. My health issues started when I was 12 when I had a Herrington Rod surgery to correct severe scoloiosis. I have a 12" bar encased in bone next to my spine, and can not bend except at the neck and hips.

When I was 17 I tried to donate blood at school and the nurse turned me down because I had the blood pressure of a 65 year old male! Turns out that I had hyperthyroidism that produced a goider. Meds to supress the tryroid and blood pressure meds started. Over time my thyroid burnt itself out and I am now on thyroid replacement.

I suffered from the Antiphospholipid syndrome when I was 27, and had 5 subsequent miscarriages. It was during this time that I suffered severe depression and started on meds for that. I finished going to college, quit working and eliminated any and all stress from my life and was able to carry my third child to term at age 35. During this pregnancy I fext EXTREME fatigue (I called myself the human chrysalis) and pretty much slept for 9 months. This was the beginning of the obvious Lupus symptoms.

I have naturally red hair and freckles, so exposure to the sun has always been a problem for me. I also have severly sensitive skin so when I started having the dry patches on my arms and legs my doc said it was eczema (sp?).

I was diagnosed with Lupus recently, as many of my Lupus symptoms are also prevalent in Thyroid disease and were attributed to this. It wasn't until I had surgery for an umbilical cord hernia (simple day surgery procedure) and two days into recovery collapsed at home in the bathroom. I suffered from multiple blood clots in my lungs. Sooo now I am on blood thinners.

In spite of all of my health issues I feel I have lead a pretty normal life. For me personally I just try to roll with the (medical) punches and keep on going as best I can. Most people who meet me have no idea that I have any medical conditions at all - which is the way I like it!

If you have any questions about any of the issues I have dealt with I would love to offer suggestions and insight from my own experiences. I am not a doctor so wouldn't have any concrete scientific medical advise, but would be happy to assist with non-professional information.

Best regards to you!

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Old 08-07-2007, 09:48 AM   #2
Senior Veteran
Join Date: Nov 2004
Location: UK
Posts: 1,567
goldenwings HB User
Smile Re: Health Experiences - offer to help

Hi there dottr,

Welcome to the forum. That is the best bit of being here I feel. We all offer each other help and support. It is good that you are willing to share of your life with lupus too. This is the thing to do, help others and help yourself in the process by sharing of your knowledge as a patient. Emotional support is the best thing I find, and it is so very important. We all offer that here in bundles and I have personally made some great friends by being here.

I have had SLE for 30+ years and also have lot of other medical conditions and disabilities. I find it therapeutic in itself to be able to help others and to share things that I have/am going through. I always think am in the unfortunate/fortunate position of having so much going on healthwise. Unfortunate as sometimes things can be hard to deal with and work on. Fortunate in that it allows me to be able to draw on my own experiences and be here for anyone else who needs advice and support. I will do my best to be of assistance to anyone who needs help in any way I can.

I am sure that you will be a welcome addition to our forum. Take care.

I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 08-08-2007 at 04:13 AM.

Old 08-07-2007, 06:39 PM   #3
Join Date: Feb 2004
Posts: 5,493
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Re: Health Experiences - offer to help

Hi, Dottr, and welcome to the group. It's still amazing to me that so many of us had so much going on & for so many years before everything resolved to the point that we could get Dx'es & treatment. I was one who built up slowly from childhood, too, with a few very dangerous episodes sandwiched in between many lesser problems.

I applaud your having a family with all the up's & down's you'd already weathered to that point in time. Brava! I finally got on the "right" meds, but way too late, so I'm amazed at those here who got their timing better than I did.

Hope the summer is treating you well, what with your red hair & all. I'm very photosensitive, too, and there's been nowhere to run or hide this summer. I've been taking long walks after dark, when the temp & humidity permits, that is... On my late night walks, I've met nearly every dog & dog walker in my city, I think. But, vainly enough, I still think MY dog is the cutest.

So, I hope you return often to chip in. Take good care! Sincerely, Vee

Old 08-08-2007, 11:21 AM   #4
Junior Member
Join Date: Jul 2007
Location: Ashland, OH USA
Posts: 10
beachbum22 HB User
Re: Health Experiences - offer to help

HI~~ I am new to the forum. I do not have a Dx yet. For the past 10 years or so, it was thought that I had MS. They are starting to doubt their original suspicions. I know......After 10 years???? My thoughts exactly!!!! Any help would be appreciated. I had labs done recently ANA ESR and so forth and they do not think that I have lupus either. I have visual and hearing problems as well as, incontinence and tremendous leg weakness and severe fatigue. All of which, has increasingly became worse in the last several months. I was Dx'd with moderate hearing loss, bilaterally in June. This came on suddenly. None of the docs seem to think it is as big of a deal as I do. I have had test after test with no definitive result either way. The labs done recently showed inflammation and I was Dx'd with osteoarthritis, with no explanation for anything else. I saw a quack of a neuro-opthamologist on Monday, who barely gave me the time of day!! He said my vision was okay. Good, I guess his butt can drive me to the store or whatever the next time I am having problems with my vision??? I had an VEP and an upper and lower extremity SEP on Monday as well. I also had the labs for ANA ESR Lyme and various others, 15 to be exact!!! Redone at the Cleveland Clinic. With hopes that they will show something!!! I am rambling, but I appreciate your offer of help. Feel free to tell me your thoughts at any time. I am full of questions and open to ideas.

Old 08-08-2007, 04:29 PM   #5
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Join Date: Nov 2004
Location: UK
Posts: 1,567
goldenwings HB User
Smile Re: Health Experiences - offer to help

Hiya bb22,

I am so very lucky in that I was diagnosed in about 4 days of being hospitalised when I was very young. I had been unwell for a while but things get very bad and iI was admitted to hospital and the doctors were tremendous. I really feel for everyone who hasn't had a firm diagnosis of anything whether it be lupus or whatever.

Please ask any questions that may be on your mind. I am certain someone will be here to answer you. Sometimes things seem a little bit odd to ask about, but don't ever feel that whatever is troubling you is unimportant. We all have niggling things that bug us and it is best for you to be able to ask.
That is what I always say, when you go to see your doctors' ask and ask questions and don't give up until you get an answer that satisfies you. If you are not certain of the answer or don't understand it, ask again

Look forward to speaking to you soon. Take care.

I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Old 08-09-2007, 04:02 AM   #6
Join Date: Feb 2004
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Re: Health Experiences - offer to help

Dear BB, Obviously I'm only a patient, but I have read in some of the hardcovers just how hard it is to distinguish among mild lupus, mild MS, and mild "whatever" in the early stages. I experienced that process as "crazy-making", so I can appreciate how frustrated you are.

Did you get the Cleveland Clinic test results back yet? When you do, make sure you get hardcopies for your files (it can help to keep your own files). You'll want to check to see whether autoantibody tests BEYOND the ANA were done---and, of course, for abnormalities.

Many of us have to PUSH PUSH PUSH, whether or not it's in our natures to do so. I found this pure agony, what with feeling a horrible mix of cynicism (was there ANY dr. who could help?) and desperation (how many more years of my life would slide by?). That said, you owe it to yourself to PUSH PUSH PUSH---better when you actually have symptoms to exhibit. Post more when you can, OK? Best wishes to you. Sympathetically, Vee

Old 08-12-2007, 07:10 PM   #7
Join Date: Aug 2007
Location: US
Posts: 7
SingleGirl HB User
Re: Health Experiences - offer to help

Thank you for sharing was so good to read right now.

I am in pity party mode after an incident yesterday and reading the line
"most people don't know I have any problems at all and I like it that way" really struck home with me.

Also, "rolling with the medical punches"... that was great.

I need to be able to do that... I want a normal life too and I want to stop feeling so damaged and embarrassed all the time.

Thanks again for being a good role model. Be well.

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