Tuesday, April 14, 2009

Update

I know I haven't posted in awhile, my life has been pretty crazy and as I was filing out some forms for disability I decided I should update everyone. I started seeing a new PCP (female) doctor and I've seen her twice so far, she's since then recommended me to see a endocrinologist, GI doctor. Reasons being is that my hormone levels came back showing my testosterone level being high. And then with my chronic diarrhea I have to see a GI doc.

I've also been following up with my Neurologist who has been a great help to me in my illness and they're the ones who have me on the Vit D drops now twice a day along with B12 drops once a day. Then they have me on Neurotin (sp) which is for my electrical head pains. And which I hope really helps me is they ordered phsyical therapy along with 1 day a week pool therapy. I start that tomorrow. It's going to be a battle since I'm always feeling sick and to just get myself out of the apartment to get these things done.

I also have another sleep study on Thursday night ordered by my neurologist. Hopefully its successful and I can actually sleep so they can get a good study.

Anyways, I had to go to the emergency room again last night because I aspirated some of my dinner and was having a hard time breathing (short of breath with wheezing). That wasn't any fun, I'm supposed to followup with my pulmonologist friday and see how I'm feeling. Hopefully it doesn't turn into bacterial pnuemonia.

Well thats it for now, my brain isn't working well right now.

Sunday, March 8, 2009

Update

What gives a doctor (medical) a right to start probing you about your past to try and dig up emotional stuff to just turn around and try blowing off all your symptoms and sickness to being all in your head (mental related)? Well that happened on my 1st doctors visit with a new PCP!?!?!

Anyways he entertained my lab work requests and did some labs on me on the 27th. Then this last week Tuesday and Wednesday I ended up in the emergency room with a fever of 101, chest pains, palpitations. So they hooked me up to an EKG machine and then I started having one of my SVT attacks, highest my Heart rate went to I believe was 161 which is what the EKG machine recorded on paper, I have a copy.. ER later said I was probably dehydrated and gave me IV fluids then sent me on my way, 2nd time I went was because I was starting to feel the same way and I had severe diarreah all day, they gave me fluids again and some metoprolol to lower my heart rate some they also redid my troponin level because I guess they were borderline normal.

Thursday I found out some of my lab results from the 27th, and the ones I found out about were my WBC was 11.2 and my Sed rate was 29 which isn't normal. So friday I had a followup with that new PCP, and he didn't even wanna touch my lab results and try investigating what is obviously not right along with all the problems I have been having.

So I have decided I am DONE with male doctors, this is my 3rd male doctor I've had in the last year. I'm gonna try getting into Shawnee Mission Medical's primary care facility and get a female doctor, someone who will actually listen to me (hopefully).

I am very frustrated and keep getting even more frustrated.

I'll keep everyone up to date.

Monday, February 23, 2009

Exciting News!

Great news, I found my biological mother last Thursday on Myspace. They've recently added a feature where you can search by maiden names. And just as I do every once in a while I did a search for her that day and found someone who I thought kinda looked like her (I have pictures from when I was little with her), and so then I proceeded to write her a mesg, and ask her a question that would TRULY tell me it was her, and she responded with the answer I was looking for. :D So since then we've been talking on the phone everyday and learning so much about her, and her learning about me and how I have a 1/2 sister. It's been wonderful and as soon as payday comes around for the both of us we will be seeing each other for the 1st time in 32 years or so.

The other great news is I found out she has had similar health problems that I have, when she was my age and she was finally diagnosed with Fibromyalgia after countless ER and doctor's visits. Also found out the my biological grandmother had Minieres Disease, which if I have it would explain my chronic vertigo etc.

This is all so awesome I never thought in my lifetime I would be reunited with my Mom. Anyways now I just need to get in to see the doctors and relay this information and hopefully get some answers myself!

Tuesday, February 17, 2009

Tuesday

So we begin a new week, I been feeling a little bit better since Monday except for the dizziness, then today I was feeling ok so I decided to do some cleaning around my appt.. My body did NOT like that. My BP and HR shot up and I started feeling a lot of pressure in my head with tingling then my right hand pinky and ring finger got real hot, started itching and it kinda hurt like it was having pressure bulid up in them, so I thought " jeez, I can't keep going through this" so I called my cardiologist and made an appt for tomorrow morning.

After talking with my husband today after my incident, he linked me a page about high cholesterol and the side effect you can have.. http://www.jigsawhealth.com/articles/cholesterol-symptoms.html Hrmmm sounds familiar (Magnesium, Vit D) deficiancies... So I will talk with the doctor tomorrow about doing a lipid profile on me, and hey if anything It might help me to go on a cholesterol med and servely take another look at our diet.

I'm sure it's not the answer to everything I'm experiencing, however I'm sure it won't help and could also cause life threatening problems.

Saturday, February 14, 2009

Symptoms

I thought I would list the ongoing symptoms I've been having for at LEAST the last 3-4 months, some as long as a year.

Long Term problems include -

Hypertension
Tachycardia
COPD

Main Symptoms -

SVT attacks
on and off again High WBC
Low Magnesium (on medication for now)
Hypothyroidism (was detected a month ago and now on synthroid)
Low Vit D (on vit d 50,000 IU 3x week)
Chronic Dizziness/Vertigo
Nausea
Fatigue
Diarrhea
Chills
Fever (ranging from 99.4 - 101)
Memory Loss
Hair Loss
Body aches/pains
Chest Pains
Shooting/Electrical type pain in head
Feeling Faint

Most if not all these symptoms I have everyday, and it's debilitating my life severely.

SSDD

Yes, Same Symptoms, Different Day.

Let's start off back on Thursday evening, I was feeling quite ill as usual and called my PCP, he gave me his pager number on my 1st visit to him, in case something came up and needed to talk to him. So anyways I paged him that night and told him how sick I was and how I had been doing some research online about my symptoms and a lot if not most of my symptoms fit that of Lupus. So he agreed yeah it did seem to fit, so he said he wanted me to have some blood work done at the hospital Friday and he'd have his nurse give me a call to set it up.

The next day, Friday (my birthday) I went to the hospital and had the blood work done, and continued to try enjoying my birthday, but still feeling so sick. Today Valentines day I'm still feeling bad except now I feel like I could go into a brain aneurysm or seizure because the dizziness was worse and I was having electrical type pain in my head with pressure and the back of my neck going into my head I was having tingling sensation, and also started running a low grade fever. This is HORRIBLE, why am I feeling this way? So I decided to call my doctor and tell him how I felt and see what he'd say, I apoligized from the beginning for even calling him, and he asked me what was wrong. He then basically tells me he doesn't want to be my doctor anymore. He isn't a "Specialist" and that he "doesn't know what to do with me anymore". That's when my heart fell to the floor and I almost couldn't speak because I was holding back the pain and tears, thinking "Please don't do this to me again" I'm so tired of starting over, and I'm not getting any better, only worse. ughhh.... So I kept apologizing to him for calling and then told him I just wanted to find out if the office would be open on Monday or not due to the holiday, and I didnt want to go the whole weekend feeling like this, and if it was ok to take a Klonopin. He then reassured me and said to take them, and he'd write it into my chart. Then he said he'd think about my case over the weekend.

I then got off the phone and took the klonopin, and just started crying. I'm running out of options and I told my husband, its scary to think that I might just have to die, or have a seizure, stroke or something in order to actually get a doctor to WANT to help me and try diagnosing my problem. But I don't want to get to that level, I want to try and catch it in time before it gets worse.

If anyone out there is actually reading my blog and knows someone who might be able to help me, please let me know... I don't want to die and I want to get better!!!

Thursday, February 12, 2009

Oh please God help me!

Dizziness is severe even sitting down which in turn is causing really bad nausea, having a lot of diarrhea, was running a low grade fever but now I have the chills.. When will this ever end? I don't want to spend my Birthday tomorrow being sick like this, but I know I probably will, if at all please just let me have a great day tomorrow.

I had to make an emergency appointment today with my primary care physician because of these symptoms, I was given a couple of shots, Depo Medrol and Rocephin. He also is having a CT scan of my adrenal glands done and some other tests done, and he also wants to get me referred to a infectious disease specialist to rule out anything like lyme disease.

I have been sick for over a year now, and I just want to finally have a diagnosis and start the road to recovery, instead of feeling like I'm slowly dying. My doctor is almost certain this is some kind of viral disease?

Wednesday, February 11, 2009

False Hope

I myself am tired of hearing the same thing over and over by doctors saying they'll help you etc, yet when they get frustrated with your case they just dismiss you as your medical problems being all in your head. But in fact their just too lazy to actually do diagnostic work and research what they might NOT know.

For everyone out there I can't stress ENOUGH that if you are in the same position I am in with your doctor and health, Do your OWN research, document, and take the information you have along with your concerns or questions to your doctor.

We pay too much in health care for our providers to brush us off like we're a hopeless case. I too need to take this information and use it for my own purposes, which is why I am seeing a new primary care physician.

This is YOUR ONE life to live, and you have the right to the knowledge to live your life to the fullest. Even if that means doing the research and pointing your doctor in the right direction.

If you have your own story regarding misdiagnosis or a doctor who refuses to investigate your health problems and finding a cause, let me know because I believe there are a lot of people out there that are like you and me that are trying to finding answers. Maybe we can help one another!

Another Day

I'm sitting here listening to my ipod list on itunes, crying. I'm so tired of being sick, not feeling good, hurting and not having answers to as why I feel this way. I was just released yesterday from the hospital for having pleurisy. 3 months ago I had heart cath ablation, and since then I came down with pleurisy and can't seem to completely shake it. This is just one of my problems, I also recently found out I have hypothyroidism and also my Vit D, Magnesium were low. On top of all this I have hypertension, tachycardia, dizziness/vertigo, nausea, hair loss, memory loss, severe fatigue, and some other symptom like problems.

I'm so tired of all this, I'll be 33 years old Friday and yet I feel I'll be 80. I need to loose weight so badly but my body can't seem to allow me to do the activites needed to accomplish this. I can barely walk up a flight of stairs without my heart and blood pressure going through the roof and feel like Im gonna pass out.

I haven't always been like this, I used to be a happy carefree kind of person who was always active. but now it's like a slap in the face. I ask God why? But I don't get any answers, it makes me cry even more that it seems like I don't deserve an answer? I ask for help from him, but it seems like the tools to get there are too far out of reach and I'm being denied.

I dont want to be this way, I have hopes and dreams. I'd like to finally get into a house, and get a dog. I'd like to have a child and be the best mother there is. I'd also like to not have to depend on my husband for every little thing.

It hurts me emotionally to have to see my husband go through this with me, and all the pressure I put on him. He's all I have in life, he is my family and he is my only friend.

Friendship is another thing I lack in my life, I hunger for good friends, and I so desperately hunger for family. The only family that really cared about me, passed away in 2006. My grandma I love her so much and miss her even more. She was my foundation.

I love you Grandma! And I miss you!!

I just want all this pain and sickness to go away so I can live and happy and healthier life again.