Broken Bones

You know how breaking a bone sucks? ...and you can ALWAYS tell if the injury is, indeed, a broken bone and not just a sprain or something by the sinking feeling you get in the pit of your stomach followed by the nausea...

Broken bones have to be allowed the time to heal. We have put too much strain on the poor bone and it just broke under all the pressure. Not to worry, though, our bodies are amazing and they pretty much take care of themselves. So, while it means that you'll be out of commission or at least seriously handicapped for a while--it'll be okay. It'll heal. Just rest and allow your body to turn it's healing-power-focus over to the bone in need.

Once healed, it will be stronger than new--due, of course, to the extra TLC your body gave it. Thank you, Mr. Osteoblast.

No thanks to anyone with whom I've consulted (and believe me...the list is long and distinguished), I firmly believe that the immune system works the same way. Sometimes, we put too much pressure on it and it snaps--goes temporarily mad--and begins attacking itself. But I believe that with rest, the removal of the stress that caused the problem, and a warm, fuzzy, feel-good environment, even the immune system will heal itself. Then, it will be even stronger for the experience.

Orson Whitney said: "There is the reason. It is for our development, our purification, our growth, our education and advancement, that we buffet the fierce waves of sorrow and misfortune; and we shall be all the stronger and better when we have swum and flood and stand upon the farther shore."

I am on the better side of this...I feel it. Patience, now, is the problem. I want to be completely recovered and I want it now! I want to regain a measure of my old life (albeit much stress-reduced).

So, I wait. And trust in God to reveal His hand to me when He deems it appropriate. To steal a few lines from Reba "you've gotta play the cards you've got; you don't know what Fate is holdin'." At least I'm happy. And that counts for something.

Rumbaugh

Well, Dr. Rumbaugh (Emory University) was very nice and very direct. I had actually forgotten that I had an appointment with him since I made it 4 months ago, but I went yesterday anyway. He said the answer was in my medical records: I have an atypical form of a myasthenic condition PLUS. Meaning, there isn't a name for what I have: it's an autoimmune disorder with myasthenic tendencies. He said the answer was in all the tests I've had run, but no one yet had just had the courage to tell me they didn't have a name for it.

He suggests starting a long-term regimen of Cellcept as a treatment...it takes 6-9 months to take effect, so I need to stay on a smaller dose of Prednisone for as least that long, but I can reduce my dosage drastically.

He was very optimistic about my being able to manage my condition and live a normal life. I'm investigating the possibility of a thymectomy right now...Dr. Russo (specialist at Shands University Hospital) said there were a few reported cases of people with symptoms similar to mine and in those few, rates of success following a thymectomy were high. So for now, I hang my hope on that.

I'm learning to manage okay and life is good. Life really is good. I'm planning to horse-back ride in Ireland next summer with my aunt...so I'll do whatever it takes to be in top form before then. :D

Sunshine

I feel so good. :D I started a couple of new medicines last week and they have made a world of difference. I'm nowhere close to normal, and we still don't know what's wrong...but it feels so good to feel good. Yay.

Phew

The CT was clear. No thymoma. Ergo, no open chest surgeries. Thank you.

So she dances....

...okay, so I'm not dancing. But I do currently have Josh Groban promenading across my mind belting So she danceeeeessssss...... :D

I'm waiting. We had a bunch of blood work and a chest CT on Friday, so now we wait. I have a pretty good feeling that, regardless of the results, we will pursue treatment for Myasthenia Gravis. The only thing I really wanna know is what the CT shows of my thymus gland.

If the thymus gland is normal, we can pursue minimally invasive surgical techniques like the da vinci system or a transcervical thymectomy which only has one small incision in the neck. If the CT shows the presence of a thymoma or an enlarged thymus, they will have to crack open the sternum to take it out. Yes, this is the same procedure they utilize for open heart surgeries. Honestly, I don't know if I have the fortitude or emotional strength to undergo this type of surgery right now. So we pray that a minimally invasive technique can be utilized.

I spoke to a friend today from my stake. She is an older lady who has been suffering from Fibromyalgia for 14 years now. She is in a constant state of pain--it ranges from mild to severe, but she is always hurting. So I realized that while this thing I have is awful and has turned my life upside down and inside out, it could be much worse...I could have to live with pain on top of the imposed disabilities.

Thanks for the perspective.

Check this out.

Okay--deteriorating health has given me lots of internet time...and I've started checking out other blogs. I love finding crafty people...and those who are just cool. One of them is this one: Mormon Mommy Blogs. She has a Giveaway this weekend and you should check it out by clicking here.

Myasthenia Gravis...

...is what they think it is. They did another nerve conduction study and EMG (5th one in 9 months and it's a very unpleasant test involving needles in muscles) and upon repetitive stimulation, my muscles showed a decreased response over time. This, along with a good, old-fashioned hunch has led Dr. Niceness to believe I may have Myasthenia Gravis. He's not sure, so lots of tests and CT scans have been ordered to verify.

He said that in only 75% of cases does the patient actually have the positive antibody for MG that will show up in the bloodwork. But even if the antibody doesn't show up, he thinks this is still my poison--based on my history and the EMG results from tuesday.

Good news: He thinks that I may live an almost normal life (he just doesn't realize I WILL live a completely normal life) based on my age, etc...

Bad news: He thinks I may be ineligible for treatment via IVIG (by far the easiest treatment ) because my elevated Ig-A antibody levels indicate that I'm extremely susceptible to a severe reaction. This means that I can only be treated with Prednisone or Plasmapheresis or both depending on which one works.

Next step: beyond the blood work to verify (or not) that Myasthenia Gravis (MG) is my particular autoimmune disorder, I will have a CT scan of my chest to determine the presence of a thymoma.

Dr. Niceness noticed that in the rare cases he found where MG and dysautonomic neuropathy (my earlier diagnosed problem) was present together, removal of the thymus gland was very effective in helping put the disorder into a state of remission, if you will.

So--now we wait for the tests and results. Then we try to mix and match treatments until we find something effective for me because these steroids are not very effective and they are too harmful for me to continue taking for very much longer.

....

Well, they don't know. Surprise. No one knows. However, Dr. Niceness is gonna think about it and review my medical records I left with him and call me tomorrow (before he leaves for his vacation to the Bahamas :)

He has a couple ideas...but I'd hate for him to be right, so we'll just wait for the call...

Shands

I'm nervous. I have my long-awaited appointment with a neuromuscular specialist at Shands on Tuesday...and so much rides on it.

What if they don't know? Then what? What if they say there's nothing more to be done? Am I to just exist in this semi-functional state until I die?

I'm currently taking 60 mg of Prednisone every day and this mega-dose of steroids renders me just barely functional each day. I'm fat and ugly and getting bigger every day. But if I miss a dose, it only takes me 3 or 4 hours to feel the weakness spread...so I must need it. What if there's no alternative to taking the Prednisone? I just take it for a year or two until it destroys my body, then wait to die?

I'm so anxious. For weeks, I've been excited about seeing the specialist and finally finding out what's wrong...but I suppose I need not get my hopes up, for finding out that they don't know might throw me into a depression. And I don't have a history with depression, so getting past it might be interesting.

The way things are...

...is not always the way they should be.

When you're sick, and you take medicine, you're supposed to feel better, right? Not always.

When you sleep at night, the next day you should feel rested...but sometimes you don't.

Coming home from a weekend at the beach should leave you refreshed--but when you're sick, you just feel wiped out.

Life isn't fair.

I had a tough day health-wise. I just felt so weak. I mean, I took my steroids, I slept last night, I should've woken up ready for my day today preparing for girls' camp next week...but I was just weak and wiped out all day. And there was nothing I could do about it. So, I just did what I could and didn't worry about the rest. But that doesn't make it easy.

But the camp certification went well--my YCLs this year are amazing and I can't wait for camp! The pizza was good. And I love my calling...there isn't anything I'd rather be doing right now. So, I'm happy. Life is good. It still isn't fair, but it is good.

Ah Ha.

It makes sense now. Not the why, nor the what, but the how.

Everyone tried to tell me that I got sick because of the stress I was under at that time in my life. I mean, within the year prior to getting sick, I had suffered 6 or 7 life-changing events, any one of which was significant enough to alter one's physical health...but I didn't buy it. I couldn't understand how emotional or even psychological stress could produce such physical results. Until my grandma's friend came to see me.

She put it simply: when you suffer from stress, your adrenal glands are stimulated along with other "fight or flight" responses triggered by the body. When the demands on these responses are continued for any significant length of time, your body keeps releasing these hormones being triggered and your entire hormonal balance becomes, well, unbalanced.

All these "fighters" being released into your body need something to fight and if the stress is emotional or psychological, there is no physical enemy present in your body and these little warriors create one. They turn on you and begin to attack your own immune system. And that's how long-term stress creates a very real physical problem: an autoimmune disorder.

Unfortunately, relieving the stress isn't enough to reverse an autoimmune disorder once contracted. However, a huge key to not relapsing (once the horrible, horrible poison treatment is over) is to debride the damaged neurological tissue and emotional scars left by the trauma. Then to eliminate stress from your life. Huh. Think I'll look into yoga.

Moms and RNs

So, I think it takes a special person to be a mom. I also think moms have a lot in common with RNs. And if a is true and a=b, then b must be true and it must take someone special to be an RN.

I have an aunt who has been an RN for over 30 years. She currently lives in Washington, D.C. with her daughter and working up there. When I got so sick that I needed a full-time caregiver, she took time off from her job to come stay with me during the day. She comes all day, every day and is always cheerful. I know that I could never be a nurse because half the stuff she does for me disgusts me, yet she just works along and maintains her great attitude. I tell ya--it takes someone special to devote a life to serving others the way an RN does every day.

My mom has also been incredible. She has been so willing to help me--with everything. I know she must get annoyed waiting on me hand and foot all the time, but she swears she doesn't...claims it has to do with being a mom. Listen to this: she goes to work all day, every day, then she comes back and waits on me all night. In the morning, she helps me get ready for the day before she leaves for work, and in the afternoon, picks me up before she even goes home.

THEN, she spends her days off helping me run errands or hauling me (literally) around town to get me nails done or my eyebrows waxed (if I need some help with my sanity) or preparing medical records or...etc. Yesterday, we went to Lowe's and, knowing that I can't garden so anything I buy, she's gonna have to plant for me, helped me purchase several Gerbera Daisies for the garden around my, currently unoccupied, home. Now, in the next couple of days, she'll put them in for me. And she'll never complain or say a word because she's incredible.

Moms and RNs. Thanks to you all.

Aside

I've put a few things together recently...so here's an aside from the story.

From the beginning, there was speculation that my health issues stemmed from stress. At first dismissed by me as absurd, this theory has been brought up time and time again. I admit to existing under extremely high stress levels and I've even accepted the idea that stress may have played a factor. However, I didn't put much stock in the idea that stress started all this because my body is having real autoimmune issues. And before today, I couldn't connect the emotional to the physical to say that the one caused the other. Then I spoke to a friend of my grandma today who explained things well.

Mrs. I've-Been-Where-You-Are-Now explained that extreme stressful events, whether physical, emotional, or psychological, cause the "fight or flight" reaction in the body. This reaction released certain hormones or chemicals into the bloodstream. Extreme levels of these hormones (that are made to "fight" something) cause the body to turn on itself and begin attacking itself. I guess that they are soldiers and when they are released because they are told there is an enemy present, they find an enemy. And if there isn't one, they create one.

Well, once the body has turned on itself, there are physical consequences. Like an autoimmune disorder. Dr. X made the analogy that autoimmune is a category just as broad as the word "fruit." So, that's that. I have some type of autoimmune disorder. Problem is that no one can tell me what. Not even what kind. The rheumatologist passes me off to the neurologist who is suggesting a referral to the mayo clinic because he just doesn't know.

But my "aside" was that the missing puzzle piece was found. Someone, finally, explained to me exactly how the stress could cause a real, physical problem. And I'm open to exploring alternative methods to dissolve the underlying cause of the problem...but I've gotta be able to walk first.

William Hitt Center

While I waited and waited and waited, I just kept getting progressively weaker. I couldn't climb stairs, then I couldn't walk far, then I couldn't walk without a walker, then I couldn't walk at all...etc.

I have a friend who was in a situation of serious health problems who received a miracle treatment from a place called the William Hitt Center. So I researched. They treat a wide variety of illnesses with a wide variety of treatments. They use everything from chelation to ozone therapy to amino acid therapy, even urine therapy. So we called. And Dr. Treat-All sounded extremely positive that they could do something. He suggested that we get out there ASAP. HOPE! So, we bought 3 plane tickets to San Diego, renewed passports, the parents took 3 weeks off work and away we went.

The trip was hard. My parents had to essentially carry me across the country, then across the Mexican border every day. Dr. Treat-All told me that the adrenal glands weren't working properly, my thyroid was under-active and that I had an elevated C-reactive protein, which indicated some type of inflammation in the body, probably the heart. They recommended 14 days of ozone therapy to kill anything foreign in the body and a urine therapy regimen to increase my body's immune system.

So--14 grueling days of crossing the border, being lifted in and out of vans, 14 IV pricks, daily shots and lots of money later, I see no improvement. As a matter of fact, I just kept getting weaker and weaker.

A very ill, very disillusioned Jess traveled back to Alabama, unsure of what to do next. The untimely death of a friend's daughter (her heart just suddenly stopped one night), scared the parents a lot. So, I returned to my family practice doctor and asked for help. He admitted me to the hospital for diagnostic testing...again. Hell on earth. No diagnosis.

Homeopathy

In accordance with deciding to come off of the prednisone, and feeling like I was running out of options, I decided to turn to alternative medicine.

I began seeing a Dr. Frankness who diagnosed by problems as mostly emotional-based. He said something about trauma or a traumatic experience in my past causing my body to malfunction. I only saw him for a couple weeks before (for financial reasons) switching to another chiropractor/kinesiologist in the area who has been successful working with some friends of mine. Dr. Niceness was just absolutely sure that my problem stemmed mainly from Adrenal Stress Disorder.

Wow. We finally had a name. No one in the medical profession had been able to tell us anything except to call my symptoms dysautonomic neuropathy (which didn't explain anything). I was absolutely elated. You can't imagine how good it felt, after 6 months of not-knowing-ness, to have someone tell me what the problem was.

Okay--prognosis--up to a year of supplementation and dieting and just waiting for the body to heal itself. I dove in hard-core. I was on about 15 supplements a day and this really restrictive diet: no dairy, no wheat, no preservatives, no red meat or seafood, no white flour, no yeast, no salt, no sweeteners, etc. I was only allowed to eat things like fresh fruits, vegetables, fish, chicken, and rice. Without seasonings. Not too bad, you think? Well, not bad for a couple weeks, but when you begin dragging it out over 9 or 10 weeks...it got old real fast. But I was valiant.

Somewhere about 4 weeks after seeing Dr. Niceness, I had been off of the Prednisone for 2 weeks when I got too weak to work...again. The company wasn't happy, of course, but Dr. Niceness assured me that my body would heal if I could just rest and give it time. So I took a leave of absence from work to allow myself to heal and I waited.

Today

I realize that anyone that isn't here in Alabama near me probably doesn't have any idea how I went from apparently recovering back in October to being a hospitalized bed-bound invalid in 6 seemingly endless (but realistically, short) months.

Well, in October, I was being treated by a medical genius at UAB with heavy-dose Prednisone and IVIGg. Symptoms were decreasing, life was looking good again and I thought that this particular trial was over. Boy was I wrong. I thought that when I went back to see Dr. Genius in December, he would notice my improvements and I could begin coming off the steroids...

Well, imagine my surprise when he told me that he would plan to taper off the Prednisone over the next 18 months! In my estimation, this was unacceptable. I mean, I'm not a complainer or anything, but Prednisone is horrible, horrible stuff. I only agreed to take it in the first place because I thought it was a short-term help. Not only does it carry awful hormonal side effects, but truly physical ones as well.

I went back to seeing my family practice doctor who agreed to help me dose off the Prednisone and see where that left me....that fateful decision, whether the right or wrong choice at the time started the journey I've been taking since January.

Enough?

9 months. 35 doctors. 15 weeks sick leave. Prednisone. PICC line. 2 weeks hospitalization. 3 weeks treatment in Tijuana. Extreme supplementation and dieting. Natural medicine. Modern medicine. Kinesiology. Iridology. Struggle. No strength. Wheelchair-bound. Bed-ridden. Complete invalid. No improvement. No diagnosis.

Last 3 days. Hospital. 11 Doctors. 4 MRIs. EMG (4th in 7 months). Spinal tap. 20 vials of blood. Pulmonary exam. Eye exam. Bedpans and Catheters. Steroids. Plasma. 7 IV starts resulting in 2 active IVs, 3 infiltrated veins, and lots of bruising=pincushion. All tests normal. No idea. Hell. Hope. Despair. Faith. Transfer on Friday to The Mayo Clinic.

Family. Love. Sacrifice. Unity. Fierce Loyalty. Pure Faith.

For the first time in my life, I feel like I may feel a fraction of what Job did. The bright side of it all is that God must have faith in my faith...and that brings peace.

"...art thou greater than He?" D&C 121 ...No, I'm not.

"I will lift up mine eyes unto the hills, from whence cometh my help." Psalms 121:1