Meeting in SF

[Karen, Ellen, Tanya, Jenny]

Ellen (way to go again Ellen!) helped organize our meeting with Tanya Angus, and her mother Karen in SF. It was great to meet them, and welcome them to our California Acromegaly family :) They were very gracious, even about meeting us right after their arrival in SF. They're amazing people, and I'm really grateful that they're both putting their lives in the spotlight to bring more attention to Acromegaly.

My own personal choice was to expose my life with Acromegaly online, and that's a much easier avenue to take. I still have fears and other issues with bringing the subject up, even among people I consider close friends. I have a fear of public speaking that I've never overcome, so having people like Tanya who can be a spokesperson for herself, and everyone else with Acromegaly, is very appreciated.

I really hope Tanya finds a cure with her unique case (unresponsive to treatment as she keeps growing - at 6'11" now), or at least more effective treatment. Acromegaly is such a horrible disease, and it saddens and angers me that her case wasn't caught quicker. There's not only the physical aspects of the condition to deal with, but the mental aspect that contributes to our delayed diagnosis. Personally, when I started gaining weight and my hands/feet became larger, I became depressed, and figured I had just "let myself go." It's almost like I was in denial without realizing it. I thought  I was a freak, or just weird with certain symptoms - like my continuing lactation years after having my last child - that I even feared telling my doctor my symptoms! And along with depression I had feelings of being disassociated from myself, and to a certain extent I still do now, as though I don't know myself or my feelings anymore. I believe these feelings are due to Acromegaly, as well the depression.

The symptoms of Acromegaly can be so insidious, that we fool ourselves into thinking there isn't anything wrong. Thanks so much to all who have come forward to share their stories.

Follow Tanya's story:

Tanya Angus - Official Site

ABC 13 News - Woman with gigantism is back from San Francisco with new doctor's orders

UCSF Update

I drove into UCSF yesterday to meet my new endocrinologist, since my old one transferred elsewhere. My day started off well with a free drink coupon from Starbucks because they were closed due to lack of hot water! But I ended the day kind of frustrated and disappointed.

I've had very minimal improvement on 40mg Sandostatin every 3 weeks. I've been looking into other options. Based on my MRI she stated that it doesn't look like I'm a candidate for re-operation. I'd really hoped I could avoid the expensive monthly Sandostatin shots, call me optimistic. I do stress about insurance continuing to pay that costly bill every month for me, although I have no basis for worry.

She also reminded me that Gamma Knife Radiation is an option. Maybe I'll try it, when they can guarantee I'll turn into a superhero. Forget Acromegaly, I want to be She-Hulk! :-D

The other option my prior endo and this one are pushing on me is trying the lowest dose of Dostinex/Cabergoline. I remember having some side-effects when I was on it before. I always seem to have side-effects with any drug, so I try to avoid them. Maybe I'll stop being so stubborn, resisting their advice. I'm a bad patient.

The Latest..

Good news. I'm on a new dosing schedule for Sandostatin 40mg - every 3 weeks now instead of every 4 weeks. I was tested after 3 months on the new dosing schedule. GH is 1.8, IGF-1 is 379. But, my numbers were basically the same on Sandostatin 40mg every 4 weeks. I'd hoped to see a dramatic improvement. I'll be seeing a new endocrinologist at UCSF end of October to discuss whether I should go back to the old dosing schedule, and a possibility of re-operation (slim in my opinion based on my MRI).

Also on Sandostatin side effects, my blood pressure may be slightly higher. I haven't been taking blood pressure readings every day, since I've been jogging daily and at my doctor's appointments my blood pressure is always low enough. And any other issues are negligible, although I do worry about potential damage to gallbladder.

On another note, I believe the high doses of Sandostatin had been causing almost daily muscle pains. Any time I exercised (it was very infrequent before), or did even a small repetitive activity I would have muscle pain for days. Since I started jogging daily (jogging or jog/walking 15-30 minutes) I haven't noticed the muscle pain, so that is wonderful! It seems I may have less Sandostatin side effects due to exercising, even a small amount daily. I did approach my new exercise plan carefully and slowly, and I don't push myself too hard. I'm naturally a very lazy person, but I'm realizing that not exercising doesn't seem to be an option for me. It's imperative to my health.

WORLD'S TALLEST MAN: STILL GROWING SUNDAY, AUG 8 at 10/9c on TLC

Sneak Peek

At over 8 feet tall, Sultan Kosen is the world's tallest man ... and he is still growing! In this all-new TLC special, we follow his extraordinary journey around the world not only in search of a cure to his gigantism but also to overcome his lonely existence.

As young boy in a Turkish village, Sultan dreamed of a simple life - to grow up, have a job and find a wife. At the age of 8, Sultan began to grow uncontrollably and by his teenage years, the extreme growth had forced him into isolation. Continuing to grow, he soon became the "World's Tallest Man" which brought Sultan fame and opportunities to travel around the world. While confronting his dangerous condition with medical attention, Sultan begins to seek out relationships. More than anything, Sultan longs for a wife and looks for love online, resulting in his first date ever. He also travels to the US to meet America's tallest man, former Harlem Globetrotters George Bell, and is encouraged with the new friendship. Although still growing, Sultan now lives with newfound confidence and bravery despite the continued threat to his life and his dreams.

Changed Verdict - Side Effects of Sando

I wanted to edit this post because I thought I had my answer and I believe now that I was wrong. I don't believe that arthritis is the cause of my muscle pains at all. I always read any drug information inserts as soon as I buy a prescription. I don't remember an insert stating this side effect of Sandostatin. Looking at their drug insert information online, muscle pain is not even listed as a side effect of this drug. But a simple google search tells me that statins can cause muscle pain. I'm going to mail Novartis to see what they say about this.

* * *

And the verdict is (most likely) - Arthritis!

Well the good news is my blood tests came back good. I don't have chronic fatigue (although I've been exposed to Epstein-Barr like many people), and I don't have Fibromyalgia. My heart was good, no diabetes, no low levels of potassium or Thryoid or anything else. Did have slightly high LDL (by like 2 points), and slightly low HDL(2 points again). So naturally, I'm feeling a bit like a hypochondriac at this point! :-) Is my pain in my head?? Well, it is literally many times :-)

I did ask my doctor for pain medication to manage my chronic pain since OTC doesn't help anymore. I still have headaches/neck aches, and right side sciatic pain. And I'm sick of dealing with it so I guess I'll take my chances with pain meds. To my surprise, he handed me Arthrotec. Which is an arthritis pain med! I already knew I had degenerative disc arthritis in my back due to my sciatic pain, which began last year and has been bothering me consistently. And my blood test did show a high sedimentation rate which indicates inflammation like arthritis. But I never thought the other symptoms I had could be arthritis related. I have an aunt with rheumatoid arthritis and I certainly don't have her symptoms or limited mobility! I do have joint pains sometimes, but most of the time it's muscle pain, or sciatic pain. Anyway, a Google search also confirmed chronic fatigue is a symptom of arthritis, which I also didn't know. So maybe I have my diagnosis finally! I'm happy to have some sort of answer, so I can know how to properly treat myself. And I'll be looking into seeing a Rheumatologist most likely, although I'm not sure how helpful that will be considering I don't like taking medications.

ETA: Arthrotec didn't work unfortunately. I only took one pill and had continuous stomach pain, and a bloated/full stomach feeling all day. I did eat before taking the pill as directed. The pain was like hunger, but once I ate I felt overly full and like I had reflux/the food wasn't digesting at all. And I didn't notice a significant reduction in arthritis pain either.

I'm also noticing my posture has been horrible. Trying to maintain good posture all day seems to help with headaches and sciatic pain, although my back muscles are so weak that it makes my back ache! I'm hoping to join a gym and increase my muscle to help combat the arthritis.

More Potassium and a Tip on Sando

First I'll give the Sandostatin LAR tip, because I'm going to ramble like usual :-) I thought I posted it here somewhere but I guess maybe I commented somewhere else. Anyway, people on forums have complained about the shot hurting, or getting a lump since it is a bigger needle, and the Sando is thick. When I first started getting the shots, I tensed the leg on the side I was getting the shot, and I felt pain shoot down my leg, along with developing a large, painful lump. Maybe I'm getting scar tissue and that's why getting the shot is so easy now, or maybe I'm doing something right. I make sure that I don't stand on the leg on the side that's receiving the shot, and I close my eyes and concentrate on not tensing either. It also helps to massage the area right after the shot. But truthfully, I get a small lump now and I don't massage anymore, and it's easy to deal with. I don't even feel the needle go in usually.

And...I'm onto my next theory why my BP is so high (still prehypertensive). I'm guessing I've been eating a high sodium diet that's also WAY too low in potassium. High sodium..duh..too much fast food/packaged junk. My BP goes up even after one fast food meal. I realized I've gradually cut way too many things out of my diet, probably out of laziness. Even eating at home, I thought eating smaller portions of meat was better, and added some carbs with it. I've also been boiling meats which I read causes it to lose nutrients.

I'd asked my doctors to test all of my levels of like everything possible in years past. So I assumed they checked potassium, but maybe not. I'm going to double check. I do have ALL of these symptoms of potassium deficiency: fatigue, myalgia (muscle weakness), acne, dry skin, memory loss, heart problems, digestive problems, ringing in the ear.

So I'm on week 1 of a new diet. No pill supplements since I've read they can be dangerous. Larger portions of meat like steak, potatoes, bananas, OJ, etc. Less packaged crap/fast food (I really didn't add much table salt to anything, just ate the wrong things). I should also mention prior to this diet I'd pretty much completely cut out caffeine, besides green tea a few times a week. And soda or coffee maybe once a week. So far I'm feeling more energy so that's good. Seems like less bloating and water retention. Digestive stuff better. Lost a few pounds. Feeling less cravings. Usually I crave sugar constantly. Haven't taken many BP readings yet but had a couple good ones. And I'm also aware that I may trade off a better BP for higher cholesterol levels with eating more meats (like I'll take time/remember to make sure it's not fatty every time I shop). I'll update later, along with info from the doctor about whether my potassium level was ever checked.

Healthline

Life123

Wellsphere

Mayo Clinic

Another Meetup!

Ellen (Acromegaly Bloggers), Wayne (AcromegalyCommunity.com) and I had a chance to meet up in SF. We had a great time. It was like meeting up with old friends for me, they're very warm and sharing people. It's very nice to have a support network online and in real life. I'd had a crazy week since I was a week late for my Sandostatin shots due to a doctor's office mix up, and I almost didn't go. But I figured if anyone in the world could understand me and my crazy, hormonal, totally irritable week it would be Wayne and Ellen. And I did end up getting lost for a few minutes in SF, and breaking at least one traffic law like normal when I go to SF. Those are like two requirements for me when I go to SF no matter how many times I've been there, and it's not on purpose either sadly! Yes I do have blonde roots :-D

I was already so thankful that Ellen has been so proactive, and is such a connector pulling together so many of us with Acromegaly on the Acromegaly Bloggers site. I've become so much more comfortable in myself dealing with Acromegaly, thanks in large part to Ellen's efforts. Wayne and I had only had a few conversations online prior to meeting. He works full time yet he manages his online community, and facebook site, he's working on a book, he's appeared on tv, and he's working on creating an Acromegaly nonprofit. Thank you so much Wayne for working so hard for Acromegalics, and getting the word out there. My post is by no means as eloquent as I'd like it to be. But if you're looking for additional support, definitely visit AcromegalyCommunity.com and Acromegaly Support on Facebook.

Loooong Update!

The latest is my IGF-1 is 384, and doctor says normal is up to 368. Can't remember what my GH was, but it's always under 2 with the OGTT. Since I'm still at this "almost normal" level my doctor wants to put me on a low dose of Cabergoline. He's concerned about potential cardiovascular problems. My blood pressure has been averaging about 125/80, which is good, but still not ideal because it does spike up near hypertensive levels when I'm under stress. I really don't want to take the Cabergoline though. I've fought not to take medications I don't need, or to get off medications I don't need. I've had bad side-effects with every medication I've taken, and I also wonder how I'm harming my body internally by taking these medications. And truly, those side-effects make taking the medications not worth it to me. I also suggested going from 40mg of Sandostatin every 4 weeks, to every 3 weeks instead. My blood pressure has greatly improved this last year that I've been on the 40mg. I was told there really isn't enough evidence to support that would be effective.

So now I'm stuck wondering if staying at this "almost normal" level is ok? If it's all I'll ever be? I don't know if I have a chance at normal. I feel like taking these other medications may put me at unnecessary risk. I already have a myriad of symptoms that aren't controlled by the Sandostatin. I've dealt with them as they came along. I've constantly complained about the fatigue, the headaches, etc., and my doctors tell me they don't know what's causing it. My thyroid and other levels are normal. But it greatly affects my quality of life. I didn't realize that I'd never explained to my husband in depth how this fatigue affects me till the other night. I've been dealing with this ever since 2006 at least, when I was diagnosed with Acromegaly. I guess I just blogged about it.

The fatigue is with me daily, and usually headaches too, although I have less since getting off the bp med Diovan. Dragging myself out of bed every day is an effort, socializing, staying on the computer more than an hour, driving more than 30 minutes, reading....anything that seems to require my concentration for extended periods of time seriously fatigues me. Standing for long periods, walking for long periods, just doing weekly grocery shopping fatigues me. It feels like there are hands compressing my head, my scalp feels tight, my shoulders feel like there is a weight on them. My face even feels like it's being pulled down, like there's a weight on it. If I don't have a headache already, I usually develop one on the left side, along with the muscle pain on the left side of my head and neck. And my memory and concentration are horrible. My short term and long term memory seem gone. I get tired or easily distracted when people are talking to me, or when I'm trying to read. I have to constantly tell myself to pay attention to what they're saying, or I have to constantly re-read sentences. I've turned to caffeine to help me concentrate, but it only helps so much. I have a hard time understanding people too, which is weird. It's almost like I'm dyslexic, which I know I'm not. And I'm harder of hearing now too.

I've tried to exercise regularly but seem too tired/not motivated enough to continue. About a week or two is all I manage before I stop. And the exercise is a problem too. It doesn't matter how little or how hard I work out, I always end up with muscle pain that lasts a few days to a week, and is in fact quite annoying! Why would I want to continue working out when I know this pain is what I can expect? About the only thing that seems to help with the fatigue is laying on the couch prone or almost prone with my feet up. Closing my eyes for a rest, or sleeping also helps. I can watch tv without getting too fatigued. Yay for me, that's the only activity I ever wanted to do for the rest of my life right?! I'm only 33 for Pete's sake! I can do other activities, for instance I went rollerskating at a rink a few weeks ago. It was my first time in probably 20 years, and it was so fun! But I had to push myself the whole time, like I normally do with any activity that requires my concentration. And then afterward I had to deal with the muscle pain for the next week plus. And the sad thing is how much I was looking forward to getting home and resting, like always nowadays.

A friend of mine mentioned she was recently diagnosed with Chronic Fatigue Syndrome. I'd heard of it before but never considered it. I looked into it though and it looks like I have a lot of the symptoms. It looks like it's hard to diagnose though, and that you must rule out a lot of other things first. And even if I'm diagnosed, really what is the treatment? Especially when I don't want to take more pills that I don't need to take, or pills that will give me side-effects I don't want.

I'm so completely frustrated by my condition right now. I really feel like I look great visually, I think I look almost normal. I'm so grateful the Sandostatin has given me that back at least. Developing the Acromegaly monster's appearance sure isn't every girl's dream! But I don't FEEL normal at all inside. I was a week late on my Sandostatin shot last week due to a doctor's office mix-up, and I was a basket case! I was so irritable, more so than normal. And I was in tears twice, which is not very normal for me. And they were the kind of crying jags that could've lasted forever. I was having a terrific pity party for myself. So what now? I have no idea where I go from here. I'd almost rather take the option of staying at this "almost normal" level with the knowledge that I'll probably die a few years younger, or even quite a few years younger. Rather than worsen my quality of life with more medications, and prolong my misery.

So right now I'm trying to really work on improving my health any way I can naturally. Considering I can't seem to keep a regular exercise schedule (although I am still trying), I'm getting stricter with my diet. Which is hard to do considering I have 3 growing kids, and a husband who doesn't help much in that area! I'm trying to drink green tea once a day at least, since it has cancer fighting properties, as well as helping to slim the waist. I'm trying to kick my sugar habit cold turkey, I have a feeling that won't work but I'm trying. I'm limiting natural sugars. I'm trying to eat oatmeal a few times a day since it's supposed to be good for the heart and the waistline too. I'm working on controlling portions which is very hard because ever since I've gotten Acro I've had a monster appetite. But the main problem for me is sugar I think. I'm hoping once I curb that craving, the fat along my waist will disappear and I'll have a normal blood pressure. I'm hoping that regulating my diet will help improve the Acromegaly and other symptoms I have.

Insurance Ugh!

I'm sorry, I have to post this. Is there anyone who knows ANYTHING at my insurance company?? It's like they've instructed their representatives not to give out any information about eligibility. I call in and always feel like I'm talking to myself!! These people know as much as I do. I try looking online but don't find the info I need. And every time I call in, they never know what laboratories are considered in-network, and they try to tell me that the closest in-network are 40 minutes out of town. I know that's not true because I've gone to laboratories in town and they've been covered. My doctor keeps giving me the lab slip for a lab that's not covered. Maybe they're out-of-network, but in town, but they still pay for it?? Frustrating!!

Tune in to TLC Sunday 8/7c

>> HELP! I'M TURNING INTO A GIANT - Sun at 8/7c <<
A heart-breaking look at individuals suffering with Acromegaly, a rare condition that causes the body to grow uncontrollably. These modern-day giants exhibit amazing bravery and determination to lead normal lives.

Tanya (31) - http://www.youtube.com/watch?v=HNQyHR1l-x4

Macular Degeneration

Years ago my eye doctor remarked on the fact that I had a second set of eyelashes, and he seemed surprised by that. I thought that seemed odd. Now I'm wondering if the second set of lashes is a normal thing, or if it may be another indicator of Acromegaly? The quicker someone can be diagnosed with this disease, the better.

My eye doctor also told me I had "buried drusen" a few years ago. He explained, but didn't seem to be worried about the condition. He just kept monitoring me every year. Now I'm beginning to think I'm in the early stages of Macular Degeneration. Symptoms I've had are drusen and high blood pressure (I'm actually back down to prehypertensive right now though). And in the last year or so it's become harder to read my computer monitor. I thought maybe my prescription changed, or my eyes were just getting tired quicker. It's as thought my eyes don't want to stay focused on the center of the page, but try to read around it. I've also noticed it's harder for me to tell certain colors apart, like orange and red. Those are two more signs of Macular Degeneration. I have my annual appointment in April, so I'll find out for sure then.

Meeting with Another Acromegalic

I met my first one in person today, Ellen!! I posted about it shortly on Acromegaly Bloggers, but I wanted to share on my blog a little more in depth. She and her husband were very sweet, open, and funny. Thank you Ellen for sharing so much of yourself with me. I truly appreciated it, even though I don't always show my emotions openly. I felt like we'd known each other for a long time already, since we've chatted online. I truly wouldn't have suspected she had Acromegaly if I'd met her on the street! I'm not sure if that's due to her treatment of Sandostatin? I had noticed that I thought she looked different since I'd first seen pictures of her online (prior to treatment). I wonder if the Acro monster is losing some of it's grip on me since I've been undergoing treatment too?

I remember years ago when I first started developing Acro (unbeknownst to me), and I literally felt like I was changing into a monster. Physically, and mentally I felt as if I were transforming. I would look at other people, and I recognized them as if they were a different species. I really identified with the link Ellen posted on the "Hulk" on Acromegaly Bloggers, although I didn't have the increased height of the Hulk. Anyway, I kind of expected to identify with Ellen when I saw her in that way. As if we were members of the same species :-) But I don't feel that happened. I'm not sure why, but I thought that was funny.

We talked about so many things, and it was nice to commiserate, and to share our similar experiences. I have to confess talking about Acromegaly still makes me feel like too much of a worrier, or a complainer. We do have legitimate health issues, that I can't ignore. I wish I'd had more to contribute, that I could've helped in some way besides basically affirming that we suffer from similar ailments. I know that can be helpful in its own way though, based on my own personal experience. We're not alone, and although I'm sorry she has Acromegaly too, it's also a positive thing that we share this disease. That we can identify with each other. That we're not crazy as I've thought so many times in the past :-) Seeing another person with Acromegaly who seems so "normal" on the outside was very gratifying. Living with the disease every day can be such a drag on our energy, and our outlook. But we can stay positive, and we can beat this disease to a certain extent.

I wish I could meet more of you in person. If only to hug you and say, things are going to be OK. Dealing with Acromegaly, especially in the first few months is such a shell shocking experience. But so many people I've talked to have gotten through surgery, and started treatment, and started to return to semi-normal lives. Yes, we still live with the disease, but so many of us have almost beaten it. I've never been to a therapy session for Acromegaly, or for people with tumors or cancer. In many ways this blog has been my own little therapy session. I hope everyone is doing well. In fact, it would be nice to have updates on how people are doing. I worry when I haven't heard from people for a while. Worrying is like my full time job :-)