March 18, 2009

It's been awhile

Ecclesiastes 7:13 says ~ Consider what God has done; Who can straighten what he has made crooked?

Have you ever felt like the God has placed you a spot where there is no escape? That is where I feel like I am, between a rock and a hard place. Every time I turn around I am stuck. I know God is there and He is taking care of me, I also believe He has me right where He wants me - totally dependant on Him.

My path may be crooked right now but He will straighten it out when the time is right.

I had to go to my primary care physician last week because I haven't been feeling quiet right. So she ran a bunch of blood tests. They came back with my thyroid off and something about my Rheumatoid Factor being high. So next week I will be going to a Rheumatologist.

She is also thinking my Narcolepsy is resurfacing because I am sleeping more than usual. I am in bed between 10 and 12hrs a night but awake totally wiped out. I have to sleep during the day just to function. So I have not been on the computer much at all. I haven't been reading blogs or commenting or for that matter emailing my friend much (sorry), I am just plain too tired.

I am having a 20hr sleep study done the night of the 26th and day of the 27th to see if it is Narcolepsy or something else going on. My doctor said she doesn't believe my sleepiness is caused by my meds because I have been on them too long to start showing up now.

I am not cooking meals much lately either, as soon as I start them or put them in the microwave I have to lay down, I forget about them and go to sleep. I have had to throw some TV dinners out and had to clean pots from burned on foods, but happy to report no fires or accidents.

I belong to "meals on wheels" 2 days a week. I happened to call to cancel my meal tomorrow, I have a drs appt. and the building managers are gone so it can't be delivered. Mary said she is so glad I called because she had been praying how she can helped someone more due to an extra amount of funds she has recieved - she said she had just finished praying when I called.

As we talked about my situation and my cooking she said she knew where the funds should go and has increased my meals from 2 to 5. I can't tell you how much I appreciate how God has intervened on my behalf through Mary. God is always looking out for us even when we don't know it. He takes care of even the smallest of things our food.

That is all I can think of I right now, I need to go and take a nap. Thanks for reading - and remember no matter what you are going through our Lord knows about it before we do and He is there taking care of it ahead of time. He does put us where He wants us. If I didn't have the Lord within my heart I do not know how I would ever get through anything. God is good.

March 04, 2009

Here's What's Going On

You all have been faithful readers - So I need to let you know what's going on.....

I have not been myself lately since last Thursday I have been extremely tired, blood levels wacky, SOB (shortness of breath), swelling up everywhere you name it - it's been mounting - just found out on Monday I have at least 6 autoimmune disorders, I am just fizzled. I can't concentrate so I felt I better not blog or post.

Then yesterday the PH office calls after I left 2 full detailed messages and a return phone #, she calls my home (not the # I left) and tells me not to call her anymore it isn't her problem - my PH Dr is saying I don't PH - so not to call her - I can continue with Dr. P at a different # just don't call her.

She told me on my answering machine to see a plain pulmonary dr who treats just lung problems, and that my PH Dr talked to my Neuro dr and he should treat me. (I already told her 3 times my Neuro Dr will not follow the diaphragm issue) I don't think she really listened to my messages.

My Neuro Dr. disagrees with the PH Dr and therefore will not treat or test my diaphragm. My Neuro Dr feels I need to go back to the PH Dr who deals with the lungs. I feel like a ship in the sea being tossed to and fro and it doesn't know which way to go. I have been praying and reading the scriptures I know it is all in God's hands.

I called the generic pulmonary line today, a live person told me I can't see my regular PH Dr any more, I have to start over. So she tranfers me to another #, you guessed it an answer machine - hopefully she will return my call on the # I provided. To add further to my situation I am still losing weight daily and swelling at the same time, legs, feet, neck, arms, abdomen etc... All I want is concrete answers - the days and months just go bye it has been 17 months and I am still being tossed around. I know I am a puzzle - but please find the missing pieces so I can get on with my life.

I need to have an action plan and I do not have anything. I don't feel adequate to help others on here who really need help - so I stopped posting, I don't feel qualified - so I say nothing. I might be on a lot of meds for many things but not on PH meds. So how can I help? I can't handle all that is going on in my body, all the diagnosis on top of one another have finally got to me.

I found myself crying over something so stupid - my car has to be parked in the under ground parking lot. I washed the day before the neck surgery. It's covered in dust - and people thinking they were funny - wrote - all over my car - in the dust. I got up set and started crying - its my car for pete sake! But no one should have the right to deface someone's car - let a lone draw graffiti on it - I lost it. "I can't clean my car nor will I pay someone to do it" Just leave my car alone.....

One of my wonderful social workers from the hematology clinic I go to once a week is trying very hard to find me a support group attend as well as a 1 on 1 face to face. A support group for someone who deals with multi-medical problems. You are my Pfamily I don't have my family to go to - you have been here day in and day out for me I love you dearly, your support is so greatly needed right now. Will I have to leave you if I only have a lung problem? This site is for PHA people I might not qualify. What do I do?

I did not think this neck surgery was going to be so painful - had to stop the meds because they are making me very sick. So now I sit or lay on the couch and do nothing because of the pain, I can't get comfortable.

Thanks for reading this far down. Love you all thanks for the support. Deb

P.S. I haven't been blogging or commenting so please forgive me - I am however praying for all in need. I just don't know what to say anymore, for that I'm sorry.