Great OnLine Support Groups

I have been away since Christmas, things have been a bit crazy but that is for another post. I have been spending a lot of time at the above website MDJunction. As my regular readers know, I have plenty of diseases and disorders. I have found some really great groups that I belong to and MDJunction has way to many to mention here. So, if you are in search of an online support group with kind, friendly and knowledgeable people I encourage you to check out MDJunction.

Here a the groups that you can find me in:

• Anxiety Disorders
• Autism - There are several Autism support groups
• Chronic Fatugue Syndrome
• Hypothyroidism
• Insomnia
• Parathyroid Gland - Since problems with the Parathyroid are fairly rare, this group covers all Parathyroid problems. I am a group leader in this group.
• Polycystic Ovarian Syndrome
• Social Security Disability
• Thyroid Cancer - All types of thyroid cancer. I am a group leader in this group.

If you do not see your problem listed here, I am sure that there is a group for you. See you there soon :D

The A Behind Anxiety ~ This Is Quite A Long Post

I have been absent from my blog for a while, I have been sick and I have been sick and tired. Which has really stressed me out and made my anxiety much worse. It all started with what I first thought was just a cold, I didn’t go to the doctor because the first week I was not running any fever I just felt really bad. Then came the second week and I started running a fever, my kidney‘s were really starting to hurt and my blood sugar levels were going crazier than usual. It wasn’t a really high one, my normal is 97.4 to 97.6 and it never gets any higher than that unless I am have some kind of infection. So anyway, it got up to 99.3 which I guess would equal 100.3 for a normal person? Luckily, I was able to get an appointment at our family doctor though it was not with the doctor but her physician’s assistant. The did a urinalysis, which came back with a few white cells, and sent me home with a Rx for Cipro.

I took the Cipro for three days and I was still running around a 100.3 temp, not to mention my ears were ringing like crazy and my eyes were burning. I called the doctors office and told them what was going on and they told me to quit taking the Cipro and called me in a Rx for Microbid. By this time it was almost the weekend, they told me to go to the emergency room if the temp got any worse or if I was feeling worse. It took until that Sunday night before I was back down to almost my normal temp. So, that Monday morning I called and got an appointment with the “doctor”. She redid the urinalysis and this time it was completely normal but, my temp was going back up again. She told me to stay on the new anti-biotic and see the OB/GYN to see if possible my bladder was falling and causing all of this? Luckily, I had suspected the bladder falling and had already made an appointment with yet a new OB/GYN and it was later this same day. She also sent me home with the following; pro-biotic, digestive enzymes and a omega-3. I took one of the omega-3 that night and then one the following morning. Within 30 minutes or so of taking the second omega-3, my ears were itching and I was itching from head to toe. I have taken omega-3’s before with out any problem but, I looked on the bottle and these have pharmaceutical strength “fish oils”. I am highly allergic to iodine, fish and shellfish! So, I called the doctors office and the directed me to take Benadryl. It wound up taking all day and that night to get the allergic reaction to stop.

I get to the new OB/GYN and one of his first questions was, “why are you on all of these medications?” At this point he had not seen all of my crazy diagnosis’. He checked my bladder and didn’t seem to think that it was falling (much less anything else) but, could not explain the fever, kidney’s or the blood sugar issue. I asked him about all of the other OB/GYN’s telling me that I needed a hysterectomy for various falling issues and he said that while I did not need a hysterectomy now that I would in the next ten years or so… He did want to do an endometrial biopsy (EMB) to rule out endometrial cancer. This due to my history with cancer, my mother having breast cancer twice and a family history of endometriosis. We scheduled the EMB for the following week.

In between all of this going on, I get a letter from the social security judge and my attorney. The judge turned me down for social security benefits’ and then my attorney refused to file the appeal for me. All of this caused me to have one of my worst anxiety attacks in the past two years. This was only second to when my mother passed away, that one was a big one, not the biggest but I will save that for another post. I couldn’t breath, I thought that I was going to pass out, I was nauseous and a major hot flash. Anyway, I don’t think that the judge addressed all of my issues much less all of my “social security approved” issues. Had I never had an anxiety attack, I think that this would have brought one on! I mean come on, how many people that are not chronically sick go to the doctor 10 out of 12 months of the year? I think that it is a safe bet to say, ZERO! I am trying to find a new attorney now to file the appeal for me, I will keep you posted on this.

I told my husband about the biopsy and the social security mess. He assured me that everything would work out with the social security and told me that he would go with me to the biopsy. I told him that I was a big girl and could go by myself but he insisted that he was going with me. The biopsy wasn’t as bad as I thought that it would be but, I am glad that he went with me. More than likely the biopsy will turn out normal but, the idea of having yet another cancer terrifies me. Endometrial cancer unlike follicular thyroid cancer, you don’t just cut it out and take one radioactive iodine pill and be done with it. This time I could have to deal with chemo and radiation. Even though, I have one of the best oncologist in Dallas (he also saved my husbands life when he almost died from stage IV Hodgkin’s lymphoma), I really would rather not have to go though chemo and radiation. I really could not ask for a better husband. He is my best friend and very supportive. I am sure that he gets tired of all of my freakiness at times but, he is always there to take care of me. I really do appreciate that, I don‘t think that I could deal with all of this without his support. Next week I get the results of the biopsy so, I am really not looking forward to the results. More and more added stress.

Now back to the main topic of this post, Anxiety… While I don’t think that anxiety is the cause of all of my problems, I do think that the stress of constantly being sick, the doctors not really being able to pinpoint the cause of my autoimmune issues, etc. All of this just adds to my anxiety issues. Not to mention, I can tend to be a bit of a control freak. Not the typical control freak but, if I feel that I have no control of a situation I wind up having an anxiety attack. After looking at the WebMD page on anxiety, the main symptom that jumped out at me was “fear of dying” this never entered my mind before loosing my mother. Not that I think that I am going to die, it is more the fear of leaving my children behind. I was 39 when I lost my mother, that was hard enough. I would never want to put my children though that and I guess that is my biggest fear.

I am still hopeful that the biopsy will turn out negative and I will be able to get the social security decision reversed. I will let you know about the biopsy next week. I have several doctors appointments so, I am sure that I will be posting several (that is as long as I am not completely wiped out). But, the social security will be whenever……

Update To My Last Thyroid Post

Back on the 15th, I did a post on Under Diagnosed Thyroid Disorders ~ Learning Disabilities ~ Fibromyalgia. Since then I have been back to the endocrinologist (I have to go ever three months to check on the cancer). First we went over my labs, which were the best that they have been in years! My white count usually runs between 12 and 14 but, this time it was 9.7. Vitamin D and Calcium are finally normal too. My T4 was a little high but, for the first time since my youngest was born I am starting to loose weight! Yea!!! So, she is leaving me on the Synthroid dose that I am on unless I loose 5 more pounds. Best of all my TSH was 0.005, normally this would not be good but for a thyroid cancer patient it is really good. Your TSH level comes from what your pituitary gland thinks that your thyroid is doing.
Next we talked about my youngest with prior low thyroid levels. The endo said that due to the strong family history of thyroid problems, my thyroid cancer and my great-grandmother’s thyroid cancer that we do need to monitor him very closely and treat if he is low. She also said that with all of the family history, he has a greater risk of developing Hashimoto’s. Hashimoto’s or Hashi is an auto-immune disease that makes your thyroid attack itself. Ahhh, not what a mother (with auto-immune issues herself) wanted to hear. So, the next week I took him to our family physician and she ran all of the thyroid tests including the antibody test for Hashi. Luckily, his levels were up since the last time we checked and he was negative for the Hashi. We will just have to keep an eye on him from now on.
While we were there, I got a prescription for Chantix. I have tried everything to quit smoking. Now, on my 4th day on Chantix I am still smoking but cut back to 15 per day and the urge to smoke is not as great. One thing that I have learned about Chantix is you really need to eat before you take it. The first day, I just had a snack and it really made my stomach upset. It also makes me a little sleepy, hopefully that will go away soon. I have also heard from other users that it will make you have strange dreams. I have had some but, nothing to bizarre.
Let me know if you have tried Chantix and how it worked for you.

Freaky Friday ~ Will Wonders Never Cease

I have posted before that every time that I go to the doctor, I get a new diagnosis. Well, earlier this week I went to the doctor to see about my fibroid issue. I was hoping that I would qualify for a fairly new procedure for fibroids called “Doppler Guided Uterine Artery Occlusion” I included an article about it from the Oxford Journals. Anyway, the doctor told me “I have good news and bad news,” that is never good. The good news was that my fibroids had not grown any in the past two years. The bad news was that I need to have a hysterectomy and re-constructive surgery. He said besides the fibroids and the cysts, I have Uterine Prolapse. And to think, I was worried about my boobs or my bum falling later in life. Years ago, I worked with a woman that had this and had a hysterectomy. But, she is the only person that I have ever known with it. It seems like that she was in her late 30’s? I am really starting to hate going to the doctor.

The “hysterectomy” itself doesn’t bother me as much as the surgery does. I don’t do pain well and there are not many pain killers that I can take either. When I had my thyroid out, it took the surgeon and the anistegeoligist to come up with something for me to take. It worked “ok” after the swelling went down before that the pain was unbearable. The swelling was due to my bruising problem, I bruise at the drop of the hat. I always have bruises and never know where they come from. The other thing that scares me is the numbness that goes along with surgery. When I had my thyroidectomy, it took just about a year before the feeling came back in my neck. Oh, and I can’t forget my fear of something else not working after surgery. I don’t do well with percentages, when I had my biopsy for my thyroid they told me “don’t worry, only 5% of these ever come back anything.” It came back follicular thyroid cancer. Then the doctor told me only 1-3% of people that have a thyroidectomy have their parathyroid quit working. See, I am not very good with percentages.

The past few days I have been looking for information on hysterectomies and now I am more confused than I was when I started. I have found a few good patient friendly pages. One is a personal blog called “One Girl, No Uterus” and Hyster Sisters, which is an online group. Let me tell you, it was much easier finding a surgeon for my thyroid. With hysterectomies there are so many options, it is starting to make my head spin. Laparoscopic (LSH), TLH, Laparoscopic-assisted (LAVH) and Total Abdominal (traditional). And those don’t even cover the “re-construction” part.

If anyone has any good links or information please post them here or if you would rather Email Me. I have a second opinion lined up and I hope that I will be able to put this off until this summer. When school is out and I will not have to drive anywhere.

A news article I found on CFS and FM and other vitamin info

This morning while looking for news articles on CFS and FM, I ran across an article on the use of magnesium for muscle spasms. I have been taking magnesium since I had my thyroid removed due to cancer. The magnesium has nothing to do with the thyroid or lack of but, when my thyroid was removed my parathyroid completely quit working. This only happens in 1 – 3% of thyroidectomy patients. I am not very good with percentages, when I went in for my thyroid biopsy; the doctor doing the biopsy told me “don’t worry, less than 5% of these ever come back anything.” Turns out I had follicular thyroid cancer.

Back to the article...it talks about magnesium being a natural muscle relaxer, that it can increase energy. I have been out of my magnesium for about a week and my muscle spasms have been raging! Not to mention my fibro pain and most of the time it is not that bad. Not that I don’t hurt, mine is more being sensitive to the touch rather than overall widespread pain. I am more CFS than FM, so I can not attest to magnesium and energy…I have none.

magnesium

Another good thing about magnesium is, depending on the form, is a great laxative (and is not cramping like some over the counter laxatives)! If you have chronic constipation the “magnesium citrate” is the laxative form. My favorite citrate brand, which I learned about from my doctor, is the “Rexall” brand. I have not been able to find this one in months; I used to be able to find it at Walmart in the vitamin section. I am now taking the “NOW” brand, it has the; oxide, citrate and asparate forms in it. The article says that magnesium glycinate and magnesium aspartate is the best forms for fibromyalgia. Magnesium, calcium and D work together, without one the other does not work as well.

Now about the parathyroid, your parathyroid regulates calcium in the body. Since mine no longer works, I have to take calcium, magnesium, prescription vitamin D (which is normally formed in the liver) and Calcitriol (which is normally formed in the kidneys). For me not having a working parathyroid working is much worse than not having a thyroid. The lack of my parathyroid was noticeable immediately after my thyroidectomy surgery. The day after surgery, I woke up to my hands seizing up, numb hands and feet, my lip and face twitching along with other muscles twitching. Then once I was able to eat, I started noticing that my throat would close up (just not want to work) while eating along with terrible hiccups! Until I started on all of the above listed medications, things were really terrible. Some of this still happens every once and a while but, nothing like it was.

If you want to learn more about vitamins, two of my favorite books are; Vitamin Bible and Herb Bible, by Dr. Earl Mindell. I have a few others that I will post later.