# Hello Again, Sorry I Haven't Been Around



## Airmid (Apr 24, 2013)

I'm sorry I haven't been around for a while. I started Depo Provera about 5 months ago to control the GYN aspects that my thyroid was throwing out of whack and things have just gone down hill. I've actually lost over ten pounds in a month due to profound nausea from the second shot and ironically have had severe bouts of right handed pelvic pain. Would be nice if someone did an ultra sound to see what is going on in there, it feels swollen (weird I know) and like something is pulling when I move a certain way. I do have adhesions, who knows what I look like after the first surgery and this. All they're offering me now is more hormone therapy or uterine ablation. Neither seem like a good plan. My mother had two surgeries - the first one they didn't find anything. The second a couple of years later - she was such a mess from endometriosis (which runs on both sides of my family, only one women over the age of 40 still has her uterus) that it took six hours to do a hysterectomy. I feel I have a right to be worried.

So, I went to the big regional VA hospital that uses the doctors from the neighboring med school/teaching hospital (which is a very very good hospital) and met with my new Cardiologist who told me the heart monitor had picked up ventricular arrhythmia. Not good news.

I get hospitalized 72 hours later for just short of four days due to severe complications to H1N1. I have seasonal asthma and in my rundown state I was in (not sleeping, barely able to get food in, vomiting, pain) the virus seemed to set off a serious reaction. I spent most of my time in the local cardiac unit which the VA instantly ok'ed amazingly enough.

I managed to get out to do a telehealth appointment with my cardiologist who specializes in hearth rhythm problems. Now this was a doctor who called me while wearing the heart monitor so he had already impressed me. My QT time is too long but at the same time I am tachycardia, which is a really weird combo to have. My heart is taking to long to beat but is also beating too fast per minute (I can go up into the 150's even on a beta blocker and with my low blood pressure we can't keep raising it or I'll start fainting again). He believes the uncontrolled calcium levels that I had for years and are still turning up have damaged my heart. He says he normally sees this sort of thing in hyperparathyroid patients.

Solution? A complex catheter ablation in the first week of March. I will be his only patient that day. He is highly optimistic he can solve the uncontrolled tachy issue, the arrhythmia issues are a bit trickier and they are going to have to try to induce them during the procedure to see if they can be solved.

While this is good news in many ways and am on the road to getting fixed, it does not solve the underlying issues. My thyroid is still not controlled, it is still growing suspicious nodules, it hurts and it is swollen. My calcium is still everywhere and will continue to damage my heart. My Endo and I are going to have to have a heart to heart because at the very least I want this thyroid out of my damn neck now. At least a decade I have dealt with this, probably longer since the palpation and first heart block were found in my late teens and I've already have had cancer once. If 250 mcg of Synthroid aren't fixing it then it needs to leave.

Sorry for the vent. I just feels so frustrated and the shock of my heart being damaged due to the VA not doing anything for years and ignoring issues is still hard to take in five days later. I hope you all are doing well and had a good holiday.


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## Octavia (Aug 1, 2011)

Airmid said:


> My Endo and I are going to have to have a heart to heart because at the very least I want this thyroid out of my damn neck now.


Seems reasonable to me. You've given it your best shot for years!

An ENT would be happy to take it out for you! 

Welcome back!


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## Andros (Aug 26, 2009)

Oh, dear! You have been missed!

Airmid.......................I am wondering if it might be wise to firstly have the thyroid out, get you on track with replacement meds for that and then reassess. Maybe a consult w/an ENT?

This is a most disconcerting situation. You are in my prayers for all of this.

Many hugs.


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## Airmid (Apr 24, 2013)

Thank you both. 

Sadly the ENT will not even consider surgery since the tachycardia is not controlled via medication, that's an out. Plus they want to know where the extra calcium is coming from. The Cardiologists are starting to suspect my adrenals might be more responsible, especially since I feel a lot better on steroids (due to the asthma complications). I stop the steroids in two days, unless my lung function isn't there yet, then I continue. It's been ten days so far and I honestly don't want to stop the steroids.

Last month was probably one of the more hellish of my life. I was so sick and in pain, losing weight rapidly and my lab tests on Dec 31st show that I was starting to show signs of malnutrition even with forcing myself to eat despite the nausea/vomiting while at the regional VA hospital. No wonder I became so ill with the flu, and no one at the VA did anything.

So, I guess it's cardiac first. The arrhythmia I've been having is potentially dangerous for surgery and while there's no way to know if I'll go into it while under, the chance of it progressing to a more life threatening one is a big risk to take. My plan right now is Heart, then Thyroid, then address the GYN issues I've had for almost two decades now. I'll know more about the heart issues after the ablation, the date of which the VA has screwed up once again. Thank God I called to ask what time I had to be there this morning.


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## Airmid (Apr 24, 2013)

Wow just got the new date on my ablation: Feb 11th. It seems so soon, and it's amazing that when they messed up the dates I actually got one sooner. I'll have to spend the night in the hospital.

While I do want this done, I have to admit I'm terrified.


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## jenny v (May 6, 2012)

What exactly is going to happen with the cardiac ablation? What does it entail and what should it fix for you?


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## Airmid (Apr 24, 2013)

jenny v said:


> What exactly is going to happen with the cardiac ablation? What does it entail and what should it fix for you?


The first part is for the tachycardia. They are highly optimistic that this will solve my uncontrolled tachycardia issues since medication sure hasn't.

The second part is a bit harder. There's been suspicions that I've been having arrhythmia's for a while based on symptoms (including the fact that I started suddenly fainting last spring until I begged to be put back on a beta blocker) but they've been transient. We finally got something with another event monitor around Thanksgiving. They'll need to try to induce this or other issues to see where they are coming from to see if the problem can be fixed. It will at the very least give us a better idea on what is happening.

My heart takes too long to beat yet beats too many times per minute (I am almost always over 100 bpm even on beta blockers). It would be somewhat humorous if it wasn't my heart doing it.


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## Airmid (Apr 24, 2013)

Well my fiancee was able to get the time off of work to take me to my procedure, so there's a silver lining. I really wanted him there. In many ways I'm glad it got moved up, less time worrying about it.

I see the doctor tomorrow to see if I need to continue my prednisone therapy and if my lung function has gotten better after the flu complications. I honestly don't want to stop the steroids. I'm actually able to eat and feel better on them. Probably not a good sign I know. If I'm well enough then Thursday I have to have a back tooth pulled and another filled at the same time. Not looking forward to either.


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## Andros (Aug 26, 2009)

Things are moving fast. Actually that is good because that's less time to fret. Just know that you are seriously in my prayers for all of this and I just know that you are going to be fine!!

Cardiology is one field where they are really really on top of it. Truly!

Sounds like the fiancee is a real keeper!

Many hugs,


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## Airmid (Apr 24, 2013)

Andros said:


> Things are moving fast. Actually that is good because that's less time to fret. Just know that you are seriously in my prayers for all of this and I just know that you are going to be fine!!
> 
> Cardiology is one field where they are really really on top of it. Truly!
> 
> ...


Thank you Andros.

My fiancee is definitely trying. We both have a lot of balls in the air right now, especially since he just returned to this job after finishing school up here. It turns out my mother would like to be with me also (both my fiancee and mother get along really well together) so I'll have extra company. My mom has always been the one to wait, including being by herself for my long neck surgery (I hadn't met my fiancee yet), and I know whatever happens she's there for the long haul.

I have my doctor's appointment today to be cleared to be well enough to have the extraction/filling done. It's getting painful enough to keep me up at night and around 3 AM this morning I checked to make sure I would have no interactions and took a shot of whiskey since it felt like the side of my face was on fire. So while I don't want to lose a tooth at least it's in the back and it will be out no latter then noon tomorrow. That just seems so far away and I keep hoping the phone will ring and the dentist can fit me in late this afternoon.

People talk about affordable health issuance. Pshaw. How about affordable dental? Three grand it would cost to save this tooth. If I had that I would be seeing the one of the best Thyroid doctor's in the nation who happens to be in my state. It's a racket I tell you.


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## Airmid (Apr 24, 2013)

Well met my new doctor, at least for the next 6 months since our VA clinic is really hurting for people to stay and is hiring even short term ones.

She's very...unusual to say the least. Very very into health foods and a tons of supplements. My Vit D has been very low for some time, and she would like to see it raised. So would we all. While I'm not against her necessarily putting me on high weekly doses again for a few months and then going back to daily doses (outside of that whole high calcium thing and if my calcium is too high I could possibly have a stroke) she didn't seem real interested into *WHY* this hadn't worked last year. My Endo believes that I may be developing Celiac Disease, and one of the blood markers for it does show this may be a possibility. Another possibility is that my thyroid being out of whack for so long has messed up my GI tract enough to hinder absorption to an extent. Which the GERD would definitely support. Thirdly, and more probably is that hyperparathyroid patients chronically have a low level of Vit D until the problem is fully fixed since it's the bodies way of protecting itself from the excess calcium in the blood damaging vital organs, which my heart supports. Who knows, it could be a combo of all three things. But she seemed disinterested in hearing about anything outside of me just not taking enough Vitamin D.

I respect that she really wants to help me. She is one of the few doctors who after seeing my last TSH alone (and that was good for me being 8.7) said I must feel awful just from my thyroid. She's also testing to see if I don't convert properly and ran full thyroid labs including for Free T3 and reverse T3. I told her that the VA would cover a change a in thyroid meds to one they didn't cover if she could show that I couldn't covert properly and was failing the Synthroid. So we'll see what those show next week as the reverse T3 is a specialty test and will have to be sent to a lab out state for processing.

But, even getting my vitamin D levels up isn't going to make my autoimmune issues go away. It isn't going to undo the damage to my heart or stop further damage from my bouncing calcium levels. It's not going to make the disc pressing on my nerve in my back stop pressing on the nerve or stop me from losing feeling in my left foot when I have a flare.

I feel like in some ways she listened to me, and in some ways she totally dismissed everything. The one good thing she did do is actually validate what I went through with the IUD last spring and said all of it never should have happened along with the levels of pain from beginning to weeks after it was out. Doesn't really change the fact though that she thinks vitamin D will save me. I feel at this point in time we should be finally looking into perhaps why my body doesn't seem to want this, instead of just taking more and more.

Sorry for the missive. This is probably more for me processing this. I did not necessarily appreciate the comments either that with my thyroid so malfunctioning I must be a mental case. This was within the first few minutes and she did somewhat rephrase things later on when I was catching her mistakes quietly. I really wanted to tell her:

"Ma'am, you judging me on lab values in the first five minutes is your business. But I will say that I am somehow still holding myself together, found someone that loves me, works part time, and even with dealing with everything I am somehow still fighting and still wanting to get better. And if the VA doesn't change their tune soon, they will find out how seriously I am willing to fight when they met my lawyer."


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## Airmid (Apr 24, 2013)

I'm starting to think I should just keep this thread as a theraputic journal as the Ablation looms nearer.

Well, had the extraction and filling on Thursday. Things went really well, even though they had to cut the tooth up to get it out it was still as relaxing as something like that combo could be, and this is from someone with a lot of dental anxiety.

Friday I talked to my Endo on the phone and for some reason whenever I try to suggest something it feels like I'm picking a fight with him unless we're face to face. It might just be tone of voice or the fact you can't see someone (or that well when we do video conferences) and can't really evaluate body language etc. So he doesn't want to change anything before the ablation which I agree with. He's not really sure as to after except switching meds. He's concerned surgery could damage my remaining parathyroids trying to get the rest of my thyroid out, which is also a concern of mine. I did point out the longer we wait, the worst it's going to be. And one of the parathyroids could be having a issue, hence my bouncing calcium. I mean geez, trying to cut virtually all calcium out of my diet for months and it's still in the 10's. My parathyroid is high end of normal while my vitamin D is tanking despite supplaments. These are actually all classic signs of primary hyperparathyroidism (at my first surgery my parathyroid hormone was actually high, near 200 due to how long I had had the issue) and obviously something is wrong especially since the my cardiologist believes the calcium has damaged my heart.

So, I was thinking of maybe sending a note to his nurse to pass on. Maybe that might be easier to outline the issues as I can't seem to find my voice when I talk to him. I do believe he is really trying to help me, but facing another year with uncontrolled Hashi's is just...it's not something I would wish on anyone. I really think I need to see someone who specializes in both thyroid and parathyroid problems and the VA has a contract with a teaching hospital here with just such a clinic. I'm trying to figure out the polite way of saying that it's time to step down and say I don't know and try to get me to someone that might. "I don't know" isn't always a bad answer. Giving up is.

Friday afternoon I started having more swelling at my extraction sight, my gums itch and the pain is increasing. I do have a low grade fever so I'm thinking infection. Between being massively sick recently and all the steroids it wouldn't surprise me. It doesn't feel like a dry socket (I've had those) but I hate to call my dentist even though he told me to call.

LOL. Is being too quiet a symptom of Hashi's? If it is I've got it in spades.


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## jenny v (May 6, 2012)

Call your dentist. ASAP. Dental infections can quickly spread to the bloodstream and with your body having been through the wringer and your upcoming ablation, you don't want to mess around with things right now.


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## Airmid (Apr 24, 2013)

jenny v said:


> Call your dentist. ASAP. Dental infections can quickly spread to the bloodstream and with your body having been through the wringer and your upcoming ablation, you don't want to mess around with things right now.


I did call the dentist, got a call back and am now on antibiotics. And it woke me up again in the middle of the night. It's a little bit worse but since I haven't hit the 24 hour mark on the antibiotics I'm not particularly worried. If things keep going downhill after 24-30 hours on antibiotics I'll call my dentist (I may end up calling him and finally ask for pain medication plus I have a couple of questions) and he'll either see me or direct me to the ER depending on the circumstances.

Trust me, I do watch these things. With the steroids and the recent massive illness I know I'm a bit weakened. My immune system may very well be sluggish after fighting a massive infection and then suppressed on top of it with steroids. It doesn't surprise me particularly I got the infection and like you said, I don't want to jeopardize the ablation looming closer.

Thank you for the concern though hugs1 Dental infections are definitely nothing to mess around with.


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## ifthespiritmovesme (Jan 8, 2014)

Oh, Airmid, I am so sorry you are going through all this. Makes my troubles pale in comparison. I'm praying for you, and my thoughts are definitely with you. I do hope you get the proper care that you need, and start feeling better soon.


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## ifthespiritmovesme (Jan 8, 2014)

Oh, Airmid, I am so sorry you are going through all this. Makes my troubles pale in comparison. You are in my thoughts and prayers. Hope you get some relief soon.


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## Airmid (Apr 24, 2013)

ifthespiritmovesme said:


> Oh, Airmid, I am so sorry you are going through all this. Makes my troubles pale in comparison. I'm praying for you, and my thoughts are definitely with you. I do hope you get the proper care that you need, and start feeling better soon.


"Never discount your pain or suffering by comparing it to someone else. Pain is pain and suffering is suffering."

That was the best advice I ever got and it was from my doctor while I was on medical hold and feeling bad that I was injured in a bad training accident not in combat. He also reminded me I still worked and served honorably and fulfilling those duties was all anyone had asked of me. It's something I keep in mind as I've met veterans over the years with various problems and terrible stories.

They just did a story last year about veterans dying while trying to get doctor's appointments. I would like to see an expose about veterans dying because they weren't diagnosed in time. I've sadly met a couple of those in just my own VA system. It's not something they talk about right off the bat so I wonder how many others there are out there that I've met and just didn't know. While I've had some wonderful doctors over the years, I've had some ones that truly should have had "malpractice ready" on their head.

But anyways - still doing the same here. Did manage to fall asleep for an hour around 5:20 AM and woke up feeling a little worse. Ugh. I'm waiting till a little bit later to bother my dentist, I feel bad about it but he did say call me if you need help with pain so I guess it's a conversation I have to have even though I'm loath to.


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## Airmid (Apr 24, 2013)

Oh and the first of my thyroid tests came back. No wonder there was a pause before he asked if I was sure I was taking my thyroid hormone:

On 250 mcg of Synthyroid

TSH 25.7

T4 0.89 (range 0.90-1.70)

Wow. It was 8.7 in Oct. 7.1 in July. Who the hell has a thyroid that does this? And he think we can control it better with my thyroid in? Jeebus, it needs to leave so we can dose correctly at whatever that dose may be.


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## ifthespiritmovesme (Jan 8, 2014)

Maybe that's what they'll end up doing to all of us they can't seem to help - Seems like a lot less bother and wasted time than to keep fighting for help to to feel normal. Seems an easy solution - just remove it and add meds till they're right. That way, they don't have to worry about antibodies, malabsorbtion, etc. Maybe the thyroid will go the way of the appendix..


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## Airmid (Apr 24, 2013)

I'm always a firm believer in trying noninvasive techniques first, but dear God today is the day i want to run screaming down the street screaming "Just take it out already. I'm already taking enough hormone to take down a horse and I still have a natural piece left!"

My thyroid has been cranky for days. I have a feeling we've been revving up to this. I told my Endo last July it was hurting more often. I've told my other doctors. No one is concerned.

So now it is hurting more and more. If I take my thyroid meds I feel like I'm losing my mind. Even a half dose is too much right now. So no more meds for right now. Without them I feel normal albeit hyper. With them I feel like I'm complete meltdown - racing thoughts, feeling like I'm losing my mind, jittery anxious, can't sit still, GI issues, just feel really bad.

What I have learned from this: do not try to palpitate my thyroid when it's like this because JEEBUS IT WILL HURT. I can't lean my head to far to the right. And as I was trying to cross streets today I learned not to turn it to far to the right due to stabbing pain. I feel pain constantly, tell myself it's not there, and still feel it.

If they believe they think they can still control things at this point at 250 mcg and this happens - i have bridge to sell them. At least I'll make some money so I can go see an experience endocrine surgeon.


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## Airmid (Apr 24, 2013)

Sorry for the double post here but i'm going to go into a rant. Blame the wine, blame my hurting thyroid, whatev's but I need to rant.

I have Hashimoto's. I was diagnosed during a surgery to try to get a parathyroid tumor. It was also found that my cold thyroid on the left was cancer. Some specialist (who, even as non-violent person, I will probably punch if I met him) said "Leave as much in as possible, she's young." So they left in part of my right, which is now out of control, not suppressed with Synthroid doses now up to 250 mcg (yes you read that right) and hurts like a B* now. I've had to cut all thyroid hormone out in order to control my heart. You see my meandering calcium that likes to go high has damaged my heart according my Electrophysiologist (Cardiologist that specializes in conduction disorders of the heart). I have to undergo a Catheter Ablation where they will go through my Femoral arteries to my heart to try to find the places in my heart malfunctioning and literally burn those places to death. That's the quick and sweet version - oh and I'll be awake for the fun times to be had though a bit drugged.

Before you go any further into my rant, if you don't know what high calcium/hyperparathyroidism is or does please go to this link: http://parathyroid.com/ It's a patient friendly website about what this does to you. It's important to know for the rest of this rant.

I also was injured in the line of duty in the USAF, A herniated disc in my back crushed a nerve and while a good physical therapist gave me back my ability to walk without a cane I still have nerve pain. I also have Endometriosis.

In all this time I have never used my uncontrolled Hashi's, my hyperparathyroidism, Endometriosis or herniated disc as an excuse. I worked 50+ hours a week in the USAF. I have worked full time with all these things. I have undergone three major surgeries in three years, multiple cancer scares and one cancer diagnosis. I have pushed myself to the point of collapse because I have refused to be defined by these disorders. I have fought to keep my weight acceptable and yes I know how hard that is. With the hormone disorders I gain in the middle and it disgusts me. I have fought to keep my cholesterol as low as I can (total is 208) with my LDL low and HDL in the high range of normal. I have fought for proper treatment. I have fought and while I am tired, and fogged and it feels like I run a marathon through sand almost everyday I keep going. I do truly know how hard it is at this point for everyone on this board. I'm at least a decade, a little more for other problems, and this is in no way discredits the horror that you have gone through.

I keep seeing on websites offering easy all cures. I keep seeing the touting of gluten free diets as though that will cure all our woes. There is no easy cure to autoimmune disease. Let me say that again: *There is no easy cure to autoimmune disease*. There is no easy out. Sure some of us develop Celiac Disease and benefit from a gluten free diet. Other's of us develop Hyperparathyroidism. Women with Endometriosis are more likely to develop Hashimoto's then the general population. Is there a link? Most likely and more then likely it's either due to chronic inflammation and/or tons of antibodies plus genetics.

But to see websites and even some members touting the benefits of certain diets or extracts as some end all be all just irks me. Massive doses of vitamins have not been proven to ever help unless you have true deficiency. And you wont know you have one unless you have the medical tests done. Some vitamin problems are actually attached to these disorders themselves - they are secondary. Fix the disorder in whatever way that's medically reasonable and you will have fixed the vitamin problem. It's not the other way around.

I have low vitamin D. Some would only see that and say "Well fix that and all is well." But I also have high calcium issues. My body has shut done vitamin D to protect organs as much as it can, such as my heart. Once the hyperparathyroidism is addressed, the vitamin D issue will resolve. But giving me lots of vitamin D will force my body to absorb even more calcium, making me sicker by raising my calcium as my body is forced to absorb more from my diet. Treat the underlying disorder and the vitamin issues will resolve.

I still lost a lot of who I was to these things that I am fighting to get back. I was a dancer all my life - from the time I could walk to my injury. I did practice the pointe shoe technique well into my teenage years (the ballerinas you see on their toes) but my height did make it a bit unfeasible seeing that I'm 5'8". I did continue with tap and ballroom dancing (and yes even went to a few actual balls). I know how to fence, was a runner, played different sports and an avid gardener. I do know a few languages, trained in Russian in the USAF and play a few instruments, primarily flute since I was 5 and piano since I was 10.

Some days I am so fatigued I can't get up and water my beloved plants I still keep. Some days I can't remember how to play a song I've know for a couple of decades.

That's who I was and who I am now. I am strong, we all are. We are all still fighting. We all need different things, different treatments, different meds. And we are here to keep fighting and learn. But beware of anyone who offers a quick fix in a bottle or a diet.

We are fighters.


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## Swimmer (Sep 12, 2013)

Hi Airmid,

Wow you've been through - you're going through so much. My heart goes out to you - thank you so much for sharing about your journey, where you've been and what you're going through. You're right, there are so many depths to each of us, there's not a "one size fits all quick fix solution" that will work across the board, and getting to the catalyst, root & problems is so important. With all of this, does it mean that if they remove the rest of your parathyroid, that it will help with other issues? I was praying for you earlier today. While I believe there is some help out there, I too have become disgusted with "one size fits all" "non-medical" - "non-study/peer journal" advice, and I had to get away from the iodine and sttm groups. Very disturbing. Although some info can be helpful on the homefront, so to speak, there can be serious issues that must be medically addressed.

Take care and thanks again for sharing about what has happened.

Swimmer


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## Andros (Aug 26, 2009)

One thing I know; one better be a fighter when it comes to autoimmune disease! Survival of the fittest!

The good news is that "because" most of us make up our minds to win the battle; we live long, happy and quality lives.

The road for you right now is bumpy but I am looking forward to some very "smooth sailing" for you. You are going to kick this in the butt.

Many here have done so, myself included and all of us are more than anxious to be supportive and encouraging on your journey to good health.

Sending hugs,


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