[cathycnm]

in reply to: Now what?! #1074846

JLW – "Stalled" is a good way to put it. I did RAI and not ATDs – but I remember feeling totally like a robot for several weeks while my TSH climbed to 18 within 5 weeks of RAI. Stalled, for sure.

It takes time to heal. Graves impacts every cell in our body – so even though your blood levels may be normal things are still healing. During my time with Graves – one of the biggest issues I had was that my bone cells were not responding to my med for osteoporosis – it will take months to heal the damage done to those cells. While my osteoporosis was there before the Graves – having the bone scans has really helped me to understand that it is EVERY cell and organ system that are impacted. Healing takes time.

I also continued to exercise during my Graves and hypoT stages – though cut back and watched pulse closely. I also felt better doing it – though somedays it was hard to get moving. I do feel that I was blessed to be healthy enough to continue exercise even through all of this – I also know we have to be careful to not overdue and to progress slowely. I am back to 3-5 mile runs just recently!!!

I can only tell you that limbo started to feel better for me once I started healing enough to feel normal again. Not to say there is still not some work to adjust meds and my eyes and bones are still healing. But my routine is normal again and I feel like me. I suggest just maximizing your support systems during this time and doing all you can to focus on positive healing. Let us know how if goes – and welcome! ” title=”Smile” />

[cathycnm]

in reply to: hearing problem/totally frustrated #1074850

Impish – Wow it sounds like you have been through a lot.

I joined the Foundation through a link on this site and downloaded a form to send in – that had a place to order literature on the same form. One of the official facilitators may have better info.

I have not heard of hearing loss before – I deal with eustation tube dysfunction and hearing loss that comes and goes with that (not Graves related) and I can only imagine that is frustrating.

I think anything we do to relax is helpful. It stimulates the parasympathetic nervious system (that slows us down) which helps to balance the sympathetic system (that speeds us up and increases heart rate, etc). I am a huge believer in holistic strategies (not just medication) to healing most illnesses. I am impressed with the yoga. Good for you doing what you can to empower yourself to heal. Many current research studies are starting to show a link between outcomes and the use of strategies such as yoga. Is there a guarentee that it will make a difference – no. I read a book not long ago about a psychologist who was diagnosed with prostrate cancer and given less than a year to live. The book was written by him 19 years later!!! Part of his success was doing small things to get healthier – one thing he did was yoga. He worked closely with doctors, read up on treatment options, changed his diet and exercise patterns to name a few things. He never got too helpless to stop trying – your story reminds me of that. Happy New Year!!! ” title=”Very Happy” />

[cathycnm]

in reply to: New to Graves’- glad I’m not alone :-) #1074844

Mlomba –
Welcome to the Board and Happy New Year!

First of all – Glad to hear you did not have problems with the exercise – but be cautious with pulse, etc when you are on the beta blockers. Have you discussed this (exercise program and the tight chest) with your doc? It is really important to take small steps toward healing and be sure you are working with your doctor.

Also – take the time you need to get healthy before trying to get pregnant. Hard with the clock ticking, I know. Be sure you are talking with your docs about when you can start safely trying to conceive. While there is some increased risk with getting pregnant after 35 as far as things like Down syndrome – that does not shoot up the day you turn 35. Many women are delaying childbearing until their 30’s these days. If you are older than 35 by the time the baby is due – they will offer genetic screening so you will need to be deciding how you want to handle that. Your chances of having a healthy baby are good even after 35. Risks climb more steeply after age 40, and more so after age 45. However, take a deep breath – you have time to get yourself healthy first.

[cathycnm]

in reply to: Newly Diagnosed & Struggling #1074854

KC – Welcome to our board. I am so glad your post op went well and you may be getting on top of your health challenges. As they say, that which does not kill us makes us stronger. That has become my mantra the last few years.

On the weight – once your thyroid levels are normalized, your weight set-point should return to its normal place. I also suggest keeping an eye on activity – because I don’t know where you are from – but I am from the Colorado mountains and winter tends to be a very hard time for me to be as active as normal. And while you may not be healed enough for an exercise program yet, just being aware of your activity level may help.

Also – each pound you gain requires 3,500 additional calories. So 10 pounds in one week sounds suspicious of water weight gain. Because 10 pounds a week would be like eating 3 or 4 whoppers a day on top of your normal diet. I think you need to let your doctor know so he can evaluate this. Water weight gain can be caused by many things and so staying on top of that is important. Cathy

[cathycnm]

in reply to: Comfort and Joy #1074964

Malia – I can suggest several books on the new science of happiness that talk about the sorts of things that help anyone live a more connected, happy life. A couple of favorites – What Happy People Know by Baker and The How of Happiness by Lybomersky (? spelling on the latter). The How of Happiness actually has several activities that have been researched and found to make a big difference in happiness.

Laughter and music are great suggestions. Eliminating anything that is not necessary will free up time to do what you are happiest doing, so that is also a good one. The list is long and there is now research to help guide us with making choices.

Learning what your strengths are can be huge, too. There is a free test that is used internationally by psychologists and other health professionals. http://www.viasurvey.org/ and register to take the 20 minute test. The reason this is free is that the Values in Action folks are actually collecting data on strengths. They are highly reputable and there is no hidden agenda to get you to buy anything. These folks really want to make the world a happier place. Once you learn your strengths, the page has suggestions for using them daily – you can also come up with your own list. I am a creative so it helps me to do anything that is creative. Strengths will determine which activities are the more happy ones for you. I encourage you to try the test. Cathy

[cathycnm]

in reply to: Omega3’s for TED #1074860

PS – FYI – 1 gm = 1,000 mg so three 1,000 mg pills = the 3 grams the one author recommends (Healing without Freud or Prozac was the book I read). Cathy

[cathycnm]

in reply to: Omega3’s for TED #1074859

Amanda – Good question. I know they have found a link with fish oil and decreased postpartum depression – some prenatal vitamins used after delivery now have large doses of fish oil due to this research. I read one article that says it decreases suicide rates in depressed people in general. I have also seen some research that it has anti-inflammatory effects – so that is quite possible a plus for your eyes.

Surely, it is one thing my PCP has me doing for my cholesterol and HDL/LDL (that are off balance currently since my hypoT dip a couple months ago).

The big warning is to be sure it is fish oil from the fish’s body and not the liver – because the liver has what can be toxic doses of vitamin A. Outside of watching for that – sounds like it is likely to be a positive for many of the things that can complicate Graves. I did read in one book that it needs to be 3 grams a day – most pills I have seen are 1,000 mg – 1,500 mg/day. Cathy

[cathycnm]

in reply to: sleep disturbances; restless leg syndrome and Graves #1074868

Dear Shadow – Interesting question. I found I had restless leg syndrome type of symptoms at the time I first had Graves (prior to diagnosis). I had also just started the injectable parathyroid hormone shots for my osteoporosis and I figured it was a side effect of that (leg cramps are listed as a common side effect) – plus I got seasonal affective disorder type symptoms last winter (same time as the restless leg) and gained 15 pounds. I always blamed the weight gain and calcium balance changes. But looking back, it is possible Graves played into it some. I also was on antidepressants at the time for the Graves irritability/anxiety – and some antidepressants may make RLS worse.

You might want to check out the http://www.rls.org site for some more info – the FAQ section seems very complete. Looks like it runs in families and is pretty common with pregnancy – so I suppose menopause could be a factor (I am 53). I am also a women’s health practitioner and don’t know of any direct associations with menopause but it seems plausible.

I remember it drove me nuts for a few months because I woke up several times a night because I just had to move my legs – it was creepy, so to speak. Mine went away when I cut my antidepressant and started loosing weight. It went away before I was diagnosed with Graves – so I have been both hyper and hypo and no recurrence since cutting back the antidepressants and loosing weight. I really suspect mine was partially med related. Not sure which med, though. Let us know how it goes.

[cathycnm]

in reply to: Having a really bad day……please help #1075036

Malia – I can share my own experience. I choose a psychologist and my HMO paid every dime (except co-pay, of course)

I personally find psychologists to be a better match for me because they work more with helping me develop new coping skills vs more focus on meds with psychiatrists. There are TONs of diagnises they can use. My psychologist is someone I have seen many times through the years – and he picks "adjustment reaction" usually. That just means something has changed in life and we need some counseling to get through it.

Each insurance is different, though – so you may want to check your benefits on that before making a choice. Cathy

[cathycnm]

in reply to: Having a really bad day……please help #1075034

Mickey – I definately see optimism in you. We all have strengths – and those are what carry us through life. Optimism just happens to be most related to health outcomes. But they are all good.

I think one of the biggest down sides of chronic illness is how we can get focused on our weaknesses. Let me speak for myself – I was focused on every symptom (weakness) after I was diagnosed. It had its purpose – I could put a diary together for my doc of symptoms over the past year, etc. Unfortunatley – focusing on weakness (ours or someone elses) tends to make us less happy, less engaging and less resilient. So, it is a real catch 22 – because being able to talk about symptoms and get answers is soooo important.

I guess my whole point was to say that it is also important to focus on our strengths. It is interesting – because the more I focused on my own weaknesses with Graves, the more I also focused on others weaknesses, and they on mine. Last night I was MC at our graduation and I went out of my way to focus the introductions on strengths. It felt HUGE to be able to do that again. It has been months. Faces lit up in delight when I could focus like that. I came home and read your post and was compelled to post about the strength I saw in you.

ALS is horribly sad. I lost my mom to stomach cancer and she always blamed her RAI for it – though it is doubtful it was the cause. Now, somewhat like you, I can see how much healthier I am than mom when she went through this. Imagine getting terminal cancer a year or two after a Graves diagnosis? I have some idea what you are saying about your mom – and feeling like this is treatable. Cathy

[cathycnm]

in reply to: Graves Eye Disease #1075493

Ski – Thanks for the info. I have some eye cream that I got at Sephora (sp?) called baggage handlers that is supose to help bags – I don’t see much difference. I also got some make up that is supose to help – and the coloring helps some but it is irritating to my eyes so I only use it when I need to be beautiful. I did not expect miracles due to knowing this was not so much extra fluid but fat/muscle changes. I guess I need to practice smiling more – It really helps over come the message my eyes send. It is interesting that we sleep less with Graves and our eyes give the tired message with bags. Thanks again! Cathy

[cathycnm]

in reply to: Having a really bad day……please help #1075031

Hopeful – Somedays it feels like I am leaking (or hemorrhaging) energy. I started cutting out unnecessary projects at work before I even knew I was sick. Pretty soon I had cut out all the things I created because I liked doing them. Then it was drudgery. I am happy to say that this month has begun to feel a little like the old me.

I think you are very strong at age 23 to be dealing with all of this – WOW! How hard to be so active and to have this so seriously impact your life. I see a lot of persistance in you – for sure that is a huge strength. And dancing – so maybe creative. One thing that helps me is to keep using my strengths – even if it is in new (less energy consuming ways). I try to find things everyday. Small moments of joy are healing moments. Take care and let us know how you are doing.

[cathycnm]

in reply to: Graves Eye Disease #1075489

Meegolf – How wonderful for you! Something to look forward to.

I feel blessed that my eyes stayed mild – but I get so many comments on looking tired and my look in photos looks sadder and older than before. I don’t mind aging – but I do mind the sad stuff. I don’t like sending that message to the world. I don’t know what my eyes will do once things settle a bit – and I probably am lucky enough not to need orbital surgery. However – I have read botox can be effective in reducing the bags left by Graves. (Anyone have any info on this).

I am curious to see how your surgery goes for you – and I wish you the best with the waiting list. REminds me a bit of the lines at Disney land on the really good rides. Cathy ” title=”Cool” />

[cathycnm]

in reply to: Is this happening to anyone else? #1075044

Interesting article on sleep and its benefits:
http://www.healthnews.com/family-health … -2285.html

[cathycnm]

in reply to: Having a really bad day……please help #1075029

Hopeful – Your story is also amazing to me. I cannot imagine the huge loss you feel. It sounds sooooo frustrating. I do not feel like such a strong person these days – and I am sorry if my post came across as a put down.

Right now – it sounds like you have lots of symptoms and lots of frustration. Can I ask you – what do you see as your strengths? I see them in how you are dealing with this – because you are here seeking out help. I am sure there are many that don’t come through on your posts. So, even if you don’t share here – maybe you could jot down 3-5 strengths that you see in yourself dealing with this.

The other comment is that you mention nursing school and loosing your place there. As someone who teaches nurses – I will tell you that I am amazed at the "life" that comes between my students and their goals to be nurses. Many of my students are in midlife and still working on the goal to become a nurse. Some of the most powerful healers have come from a place of being patients. I became a nurse out of frustration with a system that had no clue how to deal with postpartum depression. I felt they wanted to make me crazy – and some of the things they said were downright hurtful. I remember one doc saying "I need to be spending my time with patients who are really sick so go back to your PCP because there is nothing wrong with you." It was sometime later – when I felt better – that I decided that I would try again (was rejected my first try) to get into nursing school.

As said – your healing comes first now. And I don’t mean to say you are not an optimist – just that Mickey struck me with her optimism. I have been less than optimistic myself recently about this illness stuff – and I am trying to shift back to a happier place. But expressing your concerns is good. It is so hard to be someplace where our purpose in life feels shifted without our consent. This is why I ask about strengths – because those are something no person or disease can take from you. And those shine through in your story. I, again, appologize if my posts seemed harsh – I am still trying to put together the "lesson" of my own illness in my life and was processing out loud. Cathy

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