Back on the Fence

The last few days have proven to be testing. I have tried so hard to overcome the emotions that come along side this daily battle. The fact that my husband has been overseas for so long makes things even more trying. You try to keep your head up and look at the positive but some days there is just no getting around it and it gets best of you.

This weekend...was full of those days.

I found myself back 'On the Fence'.  Debating as to whether or not I could or even wanted to keep up with all of this. Sometimes your emotions run so hard that you eventually are just numb and it is almost as though you cannot feel any emotion at all. One can only assume that after being under such constant extreme pressure it is a way for it to protect itself from any further harm. Even though he is so far away I thank God for blessing me with such an amazing husband and children. If not for them, I am not so sure I would have the motivation to keep my head up every day. After some much needed consoling from my husband I was able to scrape on by and make it through to start another week. Here we are almost through February, another month gone by. Hopefully March is full of hope and goodness. We will see what tomorrow brings.

"And then he gave me a few words of encouragement"

Today proved to be a pretty positive day. I took my son in to see a specialist for a problem he was having. The Dr is actually one I used to use for myself but haven't seen in almost two years. I did a quick recap with her and told her I had recently looked into doing something with stem cells. While doing some research online a few days ago I ran across a doctor using people's own stem cells to regenerate dead bones with a high success rate. She immediately lit up at the idea and told me that she knows of someone that may have more information and be able to help. Yay! That was very encouraging. I also visited the chiropractor I recently started seeing and we reviewed my x-rays and some more of my medical history. He is still in the process of trying to get into touch with the nutritionist to discuss what should be done for me specifically. He did some adjustments, spoke some more about everything and on the way out he spoke some inspiring and encouraging words:

"The body is made up of cells and those cells all, with the exception of the brain, regenerate every year and a half. So I will pray for you and we will go on to hope and believe, from here on out, that in the next two years you will be better."

It's been a few...

I didn't feel well enough over the last few days to do any updates. I have a few so here are a few...

• The doctors have been talking for a while about sending me to Mayo Clinic or UT SW in Dallas. We all prefer me to be closer so we have been trying for UT SW. I finally got the phone call a few days ago from them telling me that I was accepted into the program and I will be seen March 19 by one of the nation's top mineral metabolist specialsts, Dr. Khashayar Sakhaee. I was actually quite impressed by the lengthy list of awards and accomodations he has received. This is a phone call we have all been hoping and praying we would get sooner than later for obvious reasons, however we were told these people are extremely busy and are notorious for having a backlog of people requesting to be their patients. Thank God for Dr. Kathleen Crowley having pull and being the fantastic person she is; we got in!

• I went in to see Dr. Crowley Monday and went over my six inch medical chart she brought in in preparation for my upcoming visit with UTSW. I was amazed when she told me this is the second file they created! That is a ton of documentation in just three short years. Anyhow we went over my recent MRI on my hips and I actually got some Good news! There was no evidence of necrosis in the pelvic area, hips or lower spine. The ass of a tech who called to relay the radiology report initially scared us all by telling us there was a pelvic fracture and issue with my red bone marrow. When researching this we found the bone marrow issues all seemed to end at leukemia. Discussing this all with my mother over the weekend I found that leukemia is quite prevalent in our family; which didn't help my anxiety after reading all I had earlier that day. So we spent the weekend wondering if there was a possiblity I could have leukemia like the others had died from in my family. I expressed this to Dr. Crowley and she reviewed all my bloodwork for the last few years and confirmed that I in fact do not have any indications of having leukemia. Yay! There are a few other issues we discussed that were noted but are still unexplained. On the plus side, I did manage to walk and drive all by myself to the appointment so both her and I were quite impressed with that!

•  I have been struggling for quite some time now with this extremely odd thing that is going on with my head. Lately, this weekend especially, it has gotten much worse and debilitating to the point that I was unable to sit up or even get out of bed. I sat down and really tried to figure it out and I really feel like after being in 8 car accidents, hospitalized for half a year and in bed most of the last three years, my body must be seriously out of alignment. Which I believe is causing the vast amount of pain I am in with my neck and is probably causing my dizzy/wobbly head issues. I spoke with a friend and she recommended a chiropractor she claimed to be a miracle worker. I went to see him for the first time yesterday and he uses a technique that does not have any actual hand manipulation. He uses a small painless tool that just clicks your body back into place. I noticed some immediate pressure relief in my neck. He was quite buy for the day so he recommended I come back in a few days to go over xrays and to do another treatment. He also said he would discuss my unique case with his nutritionist to see if there are any recommended supplements that might help with all the medical issues I currently have. I am crossing my fingers that this works and I will have some of my problems solved! I will find out more tomorrow. Wish me luck. 

I made a friend

You know you are getting old when you find yourself at the mall not shopping, but making friends with senior citizens by comparing ailments and inquiring about electric scooters.

Today I ventured out all the way to Dallas. That is the furthest I have been in a very very long time. I must say that by the end of the outing as I started to fall ill and was just exhausted, I grew more and more terrified that I would be too ill to make it home. It made me feel like a small child who is afraid to spend the night away from home. I was just terrified that at any moment my illness would take over like it does so well. The good thing was that as I waited for my mother to do any running around, parking the car, etc I made a new friend. She was very nice as she demonstrated to me her electric tricycle. After our initial meeting during passing in the mall, we eventually ended up in the same restaurant later on. Her and her husband even to joined us at our table and we spent the whole time comparing illnesses.

I am maxed out with exhaustion so I will continue my journey of healing tomorrow after some much needed sleep. We shall see what tomorrow brings.

Just because they are legal doesn't mean you should take them.

After years of being sick and watching the different ways my body reacted to supposed 'cures' I have come to realize that as most would think and/or believe, the natural approach is definitely much better for your body. What it is not, is convenient. To approach so many ailing illnesses in a natural manner is so extremely time consuming.  It's no wonder that with the fast pace of most lifestyles of today most people take the easy way out and just pop a pharmaceutical pill to make it all go away or at minimum mask whatever pain they may have for the time being. After taking a whopping 32 prescribed medications at once, one of my physicians and I came to the realization that they indeed were what was causing the majority of my ailments; especially the avascular necrosis. (Now for the majority who do not know what avasulcar necrosis (AVN) or osteonecrosis is I direct you here for a quick explanation.What is AVN?)

After trying to taper off so many of these drugs for well over a year without success, I had had enough. Against doctors orders to stay on my medications or die, one day I utilized my courage within and just stopped taking them all at once. It was a massive down spiral for the next several weeks but I survived. Unfortunately, several of my major joints and bones did not. I lost a lot of faith in my team of doctors and thus took a long break from the madness of my new full time career as a patient dying off from within. Things seemed to start looking up and I was feeling better than I had in months. Then we realized that even though I had stopped the taking the medications months ago,  my bones were starting to die off one by one. And so it began again. The almost daily visits to the doctors, the endless MRIs, CT Scans and Xrays. The hospital stays and surgeries to try to "save what was left" of my joints. But as time went on and days went by I was in more and more constant pain. I still had a sour taste in my mouth from the fact that pharmaceuticals put me in the predicament in the first place so I refused to start taking them again to reduce pain. Six months later I was in the hospital for another routine MRI. Only this time, the pain and bone death had taken its toll on my body and as I tried to get up to leave, I found myself unable to walk at all. In only six months time my knees went from working to candidate for "full knee replacement". That was the most devastating thing I had been through the entire three years of fighting this sickness. I could no longer walk.

It's amazing what you take advantage of. The ability to just walk to the bathroom or breathe a breath of air.  Having been put in a situation in which I lost the ability to do both on my own, I can now say that I have a whole new take on life. This did not come easy. Knowing that your body is literally dying from the inside out and having so many top doctors look at you with pity in their eye and tell you "I don't know what to do with you" does not boost your confidence. I felt like death was knocking on my back door. I found myself just waiting. Unable to walk, lying in bed in endless amounts of pain. After years of battling problem after problem relentlessly, I was ready to give up. And I sat on my imaginary fence staring down at both sides wondering if I really have it in me to keep fighting this sickness. Can I really do this for yet another year. What has my quality of life been reduced to? I can not even get up to play with my children or go to work and I can not even see my beloved husband as he is stuck across the world to pay for all our medical expenses and to make up for the fact that due to this illness I might not ever work again. Will I even make it to 30? I started to plan my funeral. Update my will. And as I started to get all my affairs in order I thought, but what will become of my two children? Will they be ripped apart? Will they forgive me for giving up and taking the easy way out?

My doctor has been on my tail for a while for me to at very least taking my dosage of vitamin C & D (which is comparable to that of a post menopausal senior). I had taken the pills down from the medicine cabinet and put them on the counter, but every day I walked right past them with disgust. Even though they were natural vitamins, they were still pills and I just could not bring myself to take another pill. And then one day in the middle of my defeat, as I was using the bathroom counter to support me, since my legs would no longer hold me up, I looked at them and something possessed me to take not the dosage I was told to take but more. So I took close to 5000 mg of vitamins C with D and coupled it with 500 mg of magnesium (magnesium is known to help with absorption of vitamins into the bones). I had spent the last week in bed with a few good days that I made it to the couch to make an appearance with my children. Then like a miracle, after taking only these dosages of vitamins, I woke up and walked right out of bed.  It was amazing! But I didn't realize that it was the vitamins that had helped so much until a few days later when I forgot to take them. The following day when I woke up I was in a lot of pain. Then it dawned on me that the only difference in the last few days was that I had not taken my vitamins. That was the first time something had gone from bad to better medically for me in a very very long time. So I decided I will take my vitamins religiously from here on out. I will also continue to research the different vitamins and their effects on joints, joint pain and necrosis. I have a ton of work to do.

Dear Avascular Necrosis aka Osteonecrosis,

Today is February 17, 2012 I have decided today is the day I will begin the journey to kick your ass. The roller coaster of emotions will be put aside as I embark on my journey to beat you. I will fight and I will win. I will conquer you. The self pity is over. The days of sullenly waiting for the inevitable call from the physicians telling me my life is gone forever are over. I refuse your death sentence. And here and now I decide I will revoke the death you have sentenced me so many times. I challenge you to beat me. I have decided I will fix this. It can be done naturally and without you taking so many of my youthful body parts. It will be just short of a miracle and take lots of hard work, tons of research, a lot of dedication and infinite amounts of determination, but it can be done. And I will do it.

Today is the day I decided I will keep not one, but BOTH of my shoulders and not one, but BOTH of my knees. God gave me these for a reason and I damn well intend to keep them. Today I decided I will fight and I will win.