Update on Moi.

Where do i begin? I often fall off the bloggers wagon. In my current like i cant finish anything. The old me was so much better at this sort of stuff. Not even sure i will go back and backtrack. I think i will just move on from today with a slight history.

About a month ago i began getting treatment for a deep fungal sinusitis. I was put on a med called Itroconazole. Very powerful drug. I take it 2x a day everyday. At first it made me so sick. I had to take zofran as well to control it. That gets easier day by day. Now i hardly need the zofran. I started about a month ago as well having all kinds of facial pain. Actually probably longer. But it became very rememberable here lately. After treating me for what they thought was a sinus infection, taking abx, and then getting a CT scan, i returned to the ENT today. He probed my sinuses, which i hate. 3 things came out of todays visit. 1. My polyps have SHRUNK. YAY means no sinus surgery yet. 2. My sinuses looks the best they have since being seen in the ENT office. Which means the Itroconazole is working. And 3. I have what is called Trigeminal Neuralgia. This is the pains ive been feeling. Here is a tid bit on the disease itself.

What Is Trigeminal Neuralgia?

Trigeminal neuralgia (TN), also called tic douloureux, is a condition that is characterized by intermittent, shooting pain in the face.

Trigeminal neuralgia affects the trigeminal nerve, one of the largest nerves in the head. The trigeminal nerve sends impulses of touch, pain, pressure, and temperature to the brain from the face, jaw, gums, forehead, and around the eyes.

What Causes Trigeminal Neuralgia?

The most frequent cause of trigeminal neuralgia is a blood vessel pressing on the nerve near the brain stem. Over time, changes in the blood vessels of the brain can result in blood vessels rubbing against the trigeminal nerve root. The constant rubbing with each heartbeat wears away the insulating membrane of the nerve, resulting in nerve irritation.

What Are the Symptoms of Trigeminal Neuralgia?

Trigeminal neuralgia causes a sudden, severe, electric shock-like, or stabbing pain that lasts several seconds. The pain can be felt on the face and around the lips, eyes, nose, scalp, and forehead. Symptoms can be brought on when a person is brushing the teeth, putting on makeup, touching the face, swallowing, or even feeling a slight breeze.

Trigeminal neuralgia is often considered one of the most painful conditions seen in medicine. Usually, the pain is felt on one side of the jaw or cheek, but some people experience pain at different times on both sides. The attacks of pain may be repeated one after the other. They may come and go throughout the day and last for days, weeks, or months at a time. At times, the attacks can disappear for months or years. The disorder is more common in women than in men and rarely affects anyone younger than 50.

Sounds lovely dontcha think? Oh will i learn to live with this just as i have with, Celiacs, Diabetes, Milk allergic, Fibro, Lupus, Fungal sinusitis, asthma, panic/anxiety disorder, migraines, and Cushings. I believe i named them all. Even sometimes i forget. So a bit about how each one is coming along.

Celiacs… its wheat/gluten allergy. I can control it through diet alone.

Diabetes… i am a type 2 insulin dependent. I take atleast 4 shots a day. I check my glucose level atleast 7 times a day. Also controlled with diet and exercise.

Allergic to Milk/Casein… just stay away from it.

Fibro.. currently take nothing to help this. I do take flexiril when im sore though.

Lupus.. still working on

Fungal Sinusitis… Itroconazole, 2 pills a day for the next 6mths. Monthly Ent appts as well as liver function tests.

Asthma.. i see a asthma care clinic once a month in Danville , Pa. They have put me on a new inhaled steroids and advair as well. Im still on the prednisone but hoping we have plans to get rid of it soon.

Panic/Anxiety Disorder.. in the process of taking a therapist. Which scares the shit out of me. I hate them. But right now the occasional Xanax is all i got for this. I quit my Lexapro back in Thanksgiving time.

Migraines.. Fioricet as needed.

Cushings syndrome… this cant be fixed till off the steroids completely. it is the ill effects steroid use gives.

Atypical Trigeminal Neuralgia…. will be treated with meds as soon i choose what one i think works best for me.

So this is the jest of my life folks. Im making it day to day. Breath by Breath. Moment by Moment. Hoping that one day, someone will finally fix me. Until then i wake up each day and go about my day with medicines, aches, pains, fatigue, etc. Some days i dont think i can go on, some days i dont want to go on. But somewhere there is someone pushing me along. I have my suspicions of who.. but wont say.But i thank them in my prayers.

I have so much more i could say. But what good would my blog be if i wrote everything in one post. So till we meet again……

God Bless.

Will you notice

The days are long and the weeks are longer.

Will there ever be sunshine after the rain..

Rainbows after the storm?

 

For me….

Probably not

Oh Lord, I want you to help me.

This sums up how im feeling right now…

http://www.youtube.com/watch?v=eDVNGW76-uA&feature=related

and this…

http://www.youtube.com/watch?v=-s7QNpqiqsc&feature=related

 

two beyond fabulous and heartfelt songs. Make me cry everytime i sing along with them.

Shameful Admission

Ive lost control and dont know how to get it back. I believe i have a case of  Steroid Pyschosis. I can not control my anger. I go from ok to extremely mad. Yesterday Coop was out of control with behaviour and I really let him have it. I gave him a harsh spanking. I then got so overwhelmed from the stress of it all, I passed out in my bed. Not sleep, passout. When i woke i wanted to call the police on myself for letting Coop have it. Which by the way, i didnt leave marks, but i have never given him more than three taps. This was like 10 or more. I felt like a monster. Like a undeserving mother. But with my own health, and his unabiding behaviour i can not deal anymore. He is mean and often hateful. He tells keke how he hates him and no one loves him , he throws fits worse than a ‘2 yo’ .

 

I dont know what to do anymore. Being sick is making me LITERALLY CRAZY. I have NO life. It all revolves around failed Dr. appts, and illness, and medication, and shots and eating………. ugh. And to top it off, i cant even look good while its happening. I look disgusting. I just wanna enjoy life, enjoy my family, be there for my family and be able to be part of the family. But I CANT.

 

I know the new drs appt was suppose to be enlightening. Helpful and encouraging. But its all the same to me. More meds, slow process, we are stumped, you might get off this, you might get better, blah blah blah…..same ol same ol. Maybe these drs will help me. But what if they dont? When will it be over? Will it be? Or will i die without ever knowing?

 

Im depressed. BAD. Im going to see a Pyschologist here soon, they gave me a tempt meds of xanax to make it to my dates. I have 4 appts this week. Lets see Tuesday i go to the ENT specialist. After that i get a bone density scan. Then Wednesday i have a sleepy study appt and after that i have to get a Chest CT. Im interested in how the ENT will fix me. Im having serious compaction issued still in my sinuses and ive already had 2 sinus surgeries. Im wondering if getting my tonsils and such removed would help at all? Im not even sure. But something has got to give.

 

Im admitting today, that the illness has won. Maybe not tomorrow, but yesterday and today it has. It has beat me down to someone i never wanted to be. A bad mother……….:sigh:

Skirt challenge day 2.

Day two. Here is my skirt. SUREEEEE is cold out. LOL

Danville Appt update.

Well i started with a breathing test, as usual. That was promptly at 1pm. Took about 30mins. My Asthma care appt was at 130pm. Promptly started by seeing the Thoracic P/A. She asked TONS of questions. She explained that we would see her, talk, get an exam, then she would go talk to the dr. Then the DR would come in and chat and look me over. Then the two of them would go have a meeting while an Allergist would come in and ask me questions and examine me. She brought in a Pysc(sp) person who they are thinking about adding to the team. Then together the 4 of them would chat while an Nurse educator came in to school me on how to use asthma meds.

So all this happened. BUT the nurse ed came in and had a list of meds i would be taking and i saw they were EXACTLY the same as what i take now. I cried. I lost it. After she walked out of course. She came back in about 5 mins later and i was bawling uncontrollably. She said she was sorry, she had jumped the gun printing that the doctors hadnt had a change to print the NEW med list. OMG was i relieved.

So they switched around some meds. Added a med i have not heard of. Their goal together is to get less steroids in my blood and more into my lungs. Where it is needed. So i have 2 daily inhaled steroids now. Then they added Prilosec to keep my gerd at bay. Tapering the steroids over the next few weeks. Then i go back Feb 9th.

They said im NOT an easy case. Of course. But i feel like these are the people. They work very closely to eachother. Every appt will be sorta this way. They will get me off steroids they said. The exact way, they arent sure yet/ But I WILL.

Some other changes. I MUST get a bone density scan, as well as a Chest CT. SO next week i get those. I had to get the pertussis vax with now includes a tetanus vax in it as well. Im not into the vaccines much, but im ok with the choice. Also they wrote orders to the ENT i see next week that immediate and forceful actions need to be taken with my sinuses. THEY ARE BAD. And making me more sick. Also i have to see a opthamologist(sp) Not just the eye dr at walmart  they are worried about my vision, especially my right eye. They think due to my long term steroid use. I have to get a pneumonicoccal vax as well and a letter has been faxed to my PCP with ORDERS it MUST BE DONE.

The pysch lady has also showed concern and will be seeing me and helping me and changing my meds. She has had the thoracics dr change my meds a bit to get me to the appt i will be having with them.

Its a lot. its rambled and jumbled. Please ask questions, cause i feel like im missing or jumping.

 

Time to take my life back.

7 day skirt challenge.

A special friend of mine from my Christian Moms Forum has challenged us to a 7 day skirt challenge. She herself wears skirts and headwraps EVERYDAY. I admire her immensely. So i took her up on her challenged and Started TODAY. This is a pic of me. Of course i wore leggings under mine. Its freakin cold here. And i wore a shirt over my tank top. This should be interesting considering i only have 4 skirts. But CJ really love this challenge and has said i can buy more skirts. 🙂

Phenomenal Woman

Phenomenal Woman

Pretty women wonder where my secret lies. I’m not cute or built to suit a fashion model’s size But when I start to tell them, They think I’m telling lies. I say, It’s in the reach of my arms The span of my hips, The stride of my step, The curl of my lips. I’m a woman Phenomenally. Phenomenal woman, That’s me. I walk into a room Just as cool as you please, And to a man, The fellows stand or Fall down on their knees. Then they swarm around me, A hive of honey bees. I say, It’s the fire in my eyes, And the flash of my teeth, The swing in my waist, And the joy in my feet. I’m a woman Phenomenally. Phenomenal woman, That’s me. Men themselves have wondered What they see in me. They try so much But they can’t touch My inner mystery. When I try to show them They say they still can’t see. I say, It’s in the arch of my back, The sun of my smile, The ride of my breasts, The grace of my style. I’m a woman Phenomenally. Phenomenal woman, That’s me. Now you understand Just why my head’s not bowed. I don’t shout or jump about Or have to talk real loud. When you see me passing It ought to make you proud. I say, It’s in the click of my heels, The bend of my hair, the palm of my hand, The need of my care, ‘Cause I’m a woman Phenomenally. Phenomenal woman, That’s me.

 

Week 3-Breakfast.

Breakfast is very dark, calm and quiet in my house. I believe you must wake up to the day slowly to have a great day.  If you introduce to much stress and chaos into the day to early, then the day is shot. Week 3 Breakfast.

Jan 3-Cold

Week 2 is Cold. And boy is it ever. We have gotten some snow over the past few day and cold just doesnt describe the feeling outside. This is a shot into my backyard off my deck. ~Cold.