Shout Out for DH

I would like to send a big Shout Out to Dear Husband (DH) for his assistance with my new header.

Do's and Don'ts

Caring for someone who is ill is just as difficult as being ill (just for different reasons). Many people have asked what can they/should they do to help DH and I. Please click below and read the linked list. Try to keep these thoughts in mind:

A FEW DO'S & DON'TS WHEN DEALING WITH SOMEONE WITH CHIARI

New Job

So I have a new job. Visiting doctors one after the other...

This week alone:

I saw Pain doc. His response was I know you are in more pain but. hang in there I don't want to make an changes until I do more tests, here is the name of a neurologist who has actually heard of CM and come back for your usual 1 month check up. UGH!

I saw new ENT, couldn't believe the nero she sent me to was so unhelpful. Wants me to try new nasal sprays for vertigo (kinda feels like putting a simple band aid on a cut atery), thinks I may have crystals in my ear drum, go see another specialist and come back. UGH!

Tried to see PCP to sign disability paperwork and schedule a tilt-table test. Or at least try and figure out why my heart races when I am upright. My appointment was at 8:00 as I pulled in the parking lot at 7:55 my cell rang. It was her office. She has the flu and won't be in today, can you come back Wednesday? Double UGH UGH.

Only relief in the whole mess is that DH and I have access to Access-a-Ride. It is a door to door but service provided by the local public transportation department. At least I don't have to drive on days I feel like I could be a danger to myself, DH or others.

Working World Ready for my Return ?

Probably not. Because I'm not. It's looking like I won't be ready soon, if ever...

New pain (considered going to the ER this week), new nausea, all sorts of new weird things. Started a symptom list for an appointment with a new neurologist (refer Dear Husband's (DH) blog - Billy Bob's Wild Ride Neuro post dated February 28, 2008). Thought I could then just type it here as well. The complete list is a full 3 pages long.

I originally asked for 3 weeks off work. The thought was to get some rest, check in with the docs, get caught up on tests the docs thought were important, maybe get the pain medication adjusted.

Instead I am sicker, weaker, more tired and less convinced I can ever go back to work.

I am a cog in the big wheel that is The City government. I shuffle paper. I am not a career woman. My job doesn't take a college degree. My showing up every day doesn't make a huge positive impact on anyone. Still, grappling with not being able to even be a cog has been the most difficult loss yet. And there have been a lot. The "short list" of loss/stress factors in the last 2 years:

2 highly invasive surgeries (Brain and surgery do not belong in the same sentence)
DH's best friend, and therefore by proxy my close friend, died of liver disease
Inherited her dog into my household of 4 cats
Saw DH through alcohol detox
DH of 17 years diagnosed with stage 4 liver disease
Father died
Assisting DH in his application for SSDI - if the answer is no, I will lose my house


Add on the fact I will have to apply for SSDI and all the new fun and exciting things my body has chosen to do....

Since these things occurred, ALL of the friends that used to fill my life have faded away. They either don't want to associate with sober DH or are sick and tired of hearing about how sick and tired DH and I are. This includes people I used to talk to every day.

God has granted me some new friends, but it just isn't the same.

Oh yeah, and by the way I think I have developed POTS......