Knowledge Is Power!

I have a very important announcement to make regarding ACM education. I received a letter in the mail from the Cleveland Clinic inviting me to an awareness program designed to educate and inspire physicians and healthcare providers, patients, their friends and family, and the public. The letter is from Mark Luciano, MD, PhD. He was not my doctor but I think he is Dr. Di's boss. Anyway, his topic is "Are Children Just Little Adults". It doesn't mention any other speakers but it should be an interesting lecture. I would love to go but cannot drive myself thanks to ACM. My brain cannot process heavy traffic :( I really wish I could be there. This is fantastic because it not only brings about Chiari awareness, but also about the endoscopic decompression option so few Chiarians and doctors know about. Let's all send positive thoughts, well wishes, and prayers to Dr. Luciano and the awareness program. Let it be a phenomenal success!

Update On Health and Makeover

Tomorrow will be six weeks since my Extreme-Lori-Makeover and I am so very happy with the results. The Anesthesiologist decided not to turn me over during the procedure due to my neck and hyper-extension. I argued that I hyper-extend all the time and really the only thing I have not done purposely yet is ride the Tilt-A-Whirl (my all time fav ride!) even though Dr. Di said that after a year nothing was off limits. Dr. Youn, my plastic surgeon, convinced me he could do what he needed to without flipping me so I hesitantly backed down -- like I had a choice. The first three days I cursed my doctor and my decision. After they took out the drainage tubes, I felt instantly better! After that, I turned a corner in recovery. I look fabulous, if I do say so myself!

My health is good. I still have occasional peripheral neuropathy in my left foot that can span my entire leg. My Chiari headaches are all most non-existent. I still have bathroom issues. Just a reminder for those who don't know, I have gastroparesis, GERD, swallowing problems with choking and pain, and slow motility as well as all the complications that come along with it (trying to keep this family friendly here). Folks take their bodily functions for granted! I wish I never had to talk about it or think about it again. I wish my body just did what it was designed to do.

OK, I'm done whining. My new gastro doc did a test where I swallow 25 of these little radioactive rings and then periodic x-rays are taken during the following week until I have passed all the rings. Lovely, I know, but extremely important! Why did no one do this test before? I liked him the instant he suggested it. After 5 days, I had 5 left but they were at the "finish line". The moral of this icky story is that my motility isn't that bad!! It is all in the "finish line"!! Hallelujah! That is fantastic news! I went out an bought new clothes to celebrate! Girl thing. Anyway, I am taking Miralax everyday. My doc said no caffeine because it is a diuretic and it takes the water out of your colon which is bad for someone like me. The morning is when I have my one cup before dealing with my children, one of which is a teenager, before they go to school. He didn't care it was only one lousy cup of coffee and told me to stop. I did it one day, almost killed my children, and now I drink my coffee with Miralax in it. Compromise :) But I'm not admitting it to him. What is that old saying, "what you don't know..." I know, I know -- good patients shouldn't withhold information but sometimes quality of life trumps comfort and the quality of my life would go way down if I was sitting in prison for killing my children in a haze of caffeine-free sleep deprivation. I am waiting to hear from his office about what I do next.

Sooooo Excited!!!

Just thought I would add a little update to the blog. I am having a "mommy makeover" on Sept. 1! For those of you unfamiliar with the term, it is a set of plastic surgery procedures that help reverse a little of the damage the kiddies have done to your body. In my case, I am having a breast augmentation, a mini-tummy tuck, and liposuction on my saddlebags, upper stomach and hips! YAY ME!!

So for those of you who are at that point where you just don't feel like you will ever be normal, it is possible! It has been one year and I don't give it much thought at all. Sure I still have issues from the Chiari, but nothing that brings me down. Life is too short to lie around on a couch and watch the world go on without you. I did that for way too long. Now, I'm living my own life. I am a mother and a wife to my family, not a burden to them.

I want you all to know that last year I was having brain surgery; that is how miserable my life had become. Now, a year later, I am having elective surgury like a normal woman because that is how amazing my life has become!!

I would appreciate any good thoughts or prayers offered as I think and pray for you all.

God Bless!

Here we go again!

I just wanted to update everyone on the latest and greatest piece of crap I am dealing with... I have just been diagnosed with Sjogren's Disease. This is an autoimmune disease that attacks the mucous producing glands -- mainly the tear ducts and the salivary glands. The disease can also be systemic so I had to give half my blood for about 15-20 different tests involving autoimmune antibodies and organs. I am working on a disease or symptom for every letter of the alphabet. Just as a reminder, I suffer from Hashimoto's Thyroiditis (autoimmune), PCOS (autoimmune), Arnold Chiari Malformation 1 and now Sjogren's.

What led me to Sjogren's...my eyes. They were itchy, burning, crazy madness. Spooning my eyes out to run them under tap water became a viable option. I went to an allergist after a couple of years of allergy drops that only worked somewhat and she said that, since it is mostly only one eye, it is probably not allergies. That got me thinking. I made an appointment with an eye doctor and he did a few wierd tests and, wahlah!, a new diagnosis. The eye doc told me to see a rheumatologist and he confirmed. I will update more when I know more.

UPDATE...

Hey all, happy spring! It has been four months since I wrote on here and I think it is time for an update. I see on here that people do visit so I should give y'all something new to read.

I am doing very well. What is left of my Chiari issues are much more manageable compared to a year ago. The crushing back of the skull headaches are pretty much gone. I think I have had maybe two or three in the past 6 months. I still have the peripheral neuropathy in my left foot and sometimes leg. It comes and goes. Very strange. The back of my throat still has numb parts to it causing me to choke on liquids if I am not careful. This one really stinks. I am always choking on my drinks. I have to sort of let the liquid accumulate in the front of my mouth, feel it out if you will, before I swallow. I still have hand tremors although I think they may be a little less pronounce. Constipation is still the bane of my existence. I currently drink prune juice like a 90 year old. It helps a little. My shoulders and neck still get very sore and cause me migraines. My hubby massages them every day for me. He is so good to me :) . The Reynaulds is still there as well as the tachycardia, but I believe I addressed that in the last post. I take a beta blocker for my sympathetic nervous system malfunction and it seems to do the trick.

I have a new diagnosis, chronic dry eyes. Fascinating story, at least to me, you see I have had the worse itchy eyes the past couple of years. They have been so maddening that scooping them out with a spoon and scrubbing them down with bleach had become a real option. Every year is worse, and this year I couldn't take it. I went to an allergist and she said because it is really only one eye (the right eye was severe), it wasn't allergies. I had never thought of that. They itched something fierce and I thought that always meant allergies. Anyway, I went to the eye doc and he did a few tests on my eyes and said I had dry patches on my corneas and diagnosed me with chronic dry eyes. He gave me some drops to try. First one worked like a charm! Amazing, the itch is gone!

I thought about taking another picture of my scar, but honestly you cannot see it. My hair covers it completely. The only way I know it is there, is the indentation where the scar would be.

My life has definitely changed for the better since the surgery. It will be a year in June and I am glad I did it. I am a full-time college student with a 4.0 GPA so far. I am looking for a job (but where I live, the pickings are slim). Oh, I almost forgot the most important part, I am much calmer. I handle stress better than I did. I think this is a direct result of the lack of headaches. I was in such a deluge of constant pain. Headaches everyday. It wears you down. You just don't have the patience for noise (ie kids). So now I spend a lot of time trying to repair the damage of the last decade on my children's and my relationships. We are definitely a lot closer now.

Well, I feel like crap. My husband decided to bring home a nasty bug to me. He is so thoughtful. I want to go back to bed now.

Thanks for reading my journey to health.

God bless you all,
Lori

Merry Christmas!!

A little late I know but the season lasts for at least another week. I had an awesome Christmas even though my husband just got laid off a week ago and I have been jobless for over a year now. Every hurdle is a learning opportunity and a gift. That is how we are choosing to look at it. He is thinking about going back to school. I start back to school Jan. 5. Luckily, we had finished Christmas shopping before we knew and the kids were able to get what they desired most. Everyone was happy and it was a peaceful day which was nice. Two years ago we lost a baby right before xmas and last year I was pregnant for the first time since losing Gabe (our first baby together) only to lose that pregnancy on New Years day. So it was nice to not have trauma this holiday season.

I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Inappropriate Sinus Tachycardia (IST). The cardiologist tried me on Midodrine which works by compressing your blood vessels and keeping your blood from pooling into your legs and such. It vastly improved my Reynaulds but raised my blood pressure too much so they discontinued that drug and put me back on Pindolol which is a beta blocker. It slows my heart too much I think (I did cardio and my heart rate was only 66 and I was very dizzy and nauseous). I was on this years ago. We will have to see what the cardiologist has to say. At least I know why my heart does what it does.

I need to address a question from Alax. First, I apologize for not answering sooner. That goes to out to all. I am the worst at checking this blog. I just get so busy, life goes on ya know. Anyway, addressing the question on how much hair does Di remove, I simply can't remember. Sorry. I do know that after meeting two of his other patients for lunch at the CC, my hair had been shaved the most. They had only a very small patch missing and I had a good 3-4 inches of hair gone. I think someone was talking while shaving and OOPSY DAISY'ED. But, I had the better stitch work done on the scar so it was a give-and-take. Maybe it is because I have curly hair which is harder to judge where it begins and ends. If you have long hair you will not have a problem hiding it. I find it harder since it is growing out. Again, due to the curls, it makes it frizzy underneath. My hairdresser mentioned it was like the hair cuts in the 80's when the girls used to shave the back of their hair. I remember that. I figure if I go for the peacock front and the shaved back, I will be a regular Valley Girl! How sexy!

OMG, I chuckled when I read that Di whipped out the napkin and borrowed a pen. That man is an absolute HOOT! Please let me know how it goes in January. If I can answer any questions until then I will. I promise to check the site more frequently.

God Bless All,
Lori

New Hope...

Looks like I'm still getting hits so I had better update. The MRI's on my kids came back normal, which doesn't surprise me because mine always did as well. The important part was getting the films for myself. I looked at them and my youngest looks like she has plenty of room but my oldest looks crowded so I will be watching her. Quite frankly I am adept at measuring for myself but the MRI is of such poor quality it is hard to identify the two bones I need as reference points to draw the line and see what's hanging below.

I still have headaches they come in waves. I just got over a two week headache and am feeling pretty good for the past 5 days. My biggest complaints are headache and fatigue (along with the rapid heart rate problem that comes and goes). If I could get rid of these issues I would be right as rain. Anyway, I was sent to a spine doc at CC to see if Tarlov cyst was the prob. Nope. So I researched on my own (this is how I solve all of my own medical problems) and I came across Dysautonomia. I think I found my needle. I read that POTS is heavily associated with Chiari. So, I learned how to tell if you have the condition and I tested myself. It fits!! There is no cure but they can help with the symptoms by slowing your heart rate and stabilizing your blood pressure. The current theory is that dysautonomia is caused by brain stem compression. HELLOOOO!! I am getting a Tilt Table Test Dec. 2. I am a little concerned that I will be going through a good span and nothing will happen. Isn't that awful?!? I just want it to fully represent what I go through more days than not. I did wear an event monitor for a week. It was supposed to be for a month but I am very allergic to sticky tape, even their hypoallergenic ones. Will let y'all know what I find out.

Good Health and Happy Holidays to All!