Monday, February 9, 2009
Good day to you! And me ... I am feeling better today than I have in a while. I've just finished a two week period [or was it three - time flys when having fun] of being totally exhausted and nauseated .. my sleep pattern got all messed up. It's kinda like having the flu all the time.
Anyway, not much news really: trying to deal with Social Security (now at the Administrative Hearing level) and with my Long-term disability insurance carrier. The carrier, Lincoln Financial, continuously is asking for updates to my condition (so they can find a reason to cut off my benefits) .. although, my condition is progressive and incurable. Funny people. Hopefully Lincoln will not go under during this economic upheavel.
Take care and I will write again. You can find me on facebook now under: firstname.lastname@example.org -- say hello. It's awful lonely here by myself. My honey has to work days. :-\
Posted by Robert at 1:27 PM
Thursday, April 24, 2008
Sorry it's been so long since I've blogged. I have been on a roller-coaster of symptoms for the last few months .. fatigue beyond belief, nausea, vomiting, weight-loss .. not a recommended diet plan .. itching, feet cramps, aching, bruising, bleeding, depression, the list goes on . . . . . . .
All and all nothing really changes .. I have good times and bum times .. but again, I'm still here.
I had my SSI interview yesterday .. turned down .. too many assets: I have a retirement plan that has $2500 in it. :-\ You are only allowed by Social Security to have $2000 in assets. So, I have to re-apply after I liquidate my assets and see if I qualify then.
New blood tests tomorrow .. checking liver function, vitamin levels, etc. Next appointment: May 23 with Kaiser Gastro (my first appointment with this group) .. lost my Providence Insurance when "administratively separated" from National College of Natural Medicine on January 8. Trying to pay out of pocket to continue seeing Dr. Jen Kearsley at Providence.
It's depressing. :-\
Hugs to you all.
Posted by Robert at 12:35 PM
Wednesday, February 13, 2008
I guess I should write a little and let you all know how I am doing: yesterday was an awful day ... I had dry heaves then bile heaves ... blood pressure 181/113 ... not good at all.
Today, I feel better .. however, I am bruised around my eyes from the trauma of wretching for almost two straight hours.
I hope you are all well. I have been dealing with the loss of my job .. the loss of my energy and ability to enjoy life.
I just saw a interview with actor Kathleen Turner with Matt Lauer (MSNBC/NBC Today Show) and how she battles an autoimmune disease also.
Well .. I am off to rest .. I promise to write more very soon!
Posted by Robert at 11:37 AM
Tuesday, January 15, 2008
Today hasn't been the best of days thus far: I'm experiencing rolling nausea (a tiny bit o'vomiting) with sweaty palms ... a little feverish I would guess ... maybe a little bug. :-\
And of course ... throw in the aching, etc. ho hum!
Keeping my chin up,
PS: I hope you stop to remember Dr. King today with a moment of peace - today is his actual birthdate (Jan. 15, 1929).
Posted by Robert at 1:21 PM
Monday, January 14, 2008
heh heh heh ... I hope you did too.
I was actually too sick to do anything. :-\
All the usual suspects: nausea, vomiting, diarrhea, severe aches and pains, itching, muscle cramping in my feet and legs, mouth ache (believe it or not), bruising and bleeding, and profound fatigue!!! I'm still thinking I may have to move to the first floor of the house .. the stairs are a killer!!!
I am about to receive a document (as is NCNM) from my doctor, in which, she recommends my not returning to work due to the degenerative nature of my incurable disease. This document was faxed to NCNM on October 30, however it was illegible. I did not receive a copy so I was unaware of its specifics. :-\
And, unfortunately, I (and my partner) agree that no one would be best served by my returning. I cannot work longer than 15 minutes before I am generally overcome by exhaustion / profound fatigue. Of course, lest we forget the "fuzzy brain" -- it is the weirdest thing I have ever experienced.
So ... it is with a heavy heart that I must pass the torch [**] to the new NCNM Campus Receptionist. I do hope you will continue to follow my progress here at Living with PBC dot com. Keep those emails coming. I promise to respond! :-)
All my best!
PS: Next doctor appointment: January 25 - status check; blood work
[**] I was "administratively separated" from my position by NCNM on January 8, 2007.
Wednesday, December 5, 2007
"Doctor Jen" (Kearsley - my PCP) called. She says that even though my liver enzyme levels are better (1184 down to 352) -- they are pretty high (32-110 is normal) and believes rushing back to work would be a mistake especially since my symptoms continue: profound fatigue, itching, nausea, vomiting, fuzzy brain -- I've even had a difficult time keeping my thoughts together to do the blog. I've also been confused over whether I've just taken meds or not. I now have a check list for it. I'm sad to report that I am having a lot more bad days than good lately.
"Doctor Jen" wants to see me again on Friday, January 25, 2008 to assess how I am doing. I will be keeping a journal (it may even be here). She also reminded me that the disease is not curable but generally not terminal. :-)
I am very happy with the modifications made to my meds: No more blood thinners - Coumadin and Digoxin. These are hard on the liver but were needed with my AFIB. Ta ta to the Anti-Coag clinic visits. I will continue with Metropolol (for the AFIB), Ursodiol (for the PBC and AIH), and the Lexapro (for the depression). My vitamin and mineral levels are all good now. I am experimenting in being gluten-free.
Russ and I are going to try making the monthly PBC support meetings in Portland at Old Wives Tales.
Well ... I am missing everyone very much! Thank you for your concern, love and support!!
All my best this holiday season!!!
Posted by Robert at 4:19 PM
Wednesday, November 28, 2007
They said: "Dr. Jen" (Jennifer Kearsley, my PCP) will need to wait on Dr. Benner's report (which may, more-than-likely, included a wait for the results of the upcoming ACHT test on Tuesday, Dec 4) before she can make any determination about my work future. More news on Dec 5 maybe??
And so ... the wait continues ...
How's your patience doing? :-D
Posted by Robert at 3:14 PM
Tuesday, November 27, 2007
I saw the liver specialist, Dr. Kent Benner, this morning. After looking at my progress (see below) he will recommend to Dr. Kearsley, my PCP, I return to work ... that working may actually ease some of my symptoms. However, he could not really say whether I will continue to experience profound fatigue, foot cramps, leg aches, nausea, vomiting, etc.
Kinda left me wondering ...
Indeed, my liver enzyme level numbers are better. The Alkaline phosphatase level in January (when I went into the hospital in AFIB) was recorded at 1184 (very high - normal is 32-110) ... in October new blood tests showed it at 352. So yes, the Ursodiol is working -- it is slowing the damage caused by the disease.
A Cortrosyn [ACTH] Stim test was ordered: Tuesday, December 4 at 9:30am.
So ... the wait continues ...
Posted by Robert at 7:12 PM
Thursday, November 22, 2007
Sunday, November 18, 2007
Just a little Sunday update ...
This weekend I've been feeling nauseated, having painful joint aches -- been having a hard time sleeping, profound fatigue, and lots of fuzzy brain "moments". heh heh heh.
Of course, with all that comes some depression. I find the inability to do what I used to, things that I used to just take for granted, as very frustrating. Sometimes the challenge is learning to accept the reality of the situation and accordingly adjust.
Anyway, Russ is taking very good care of me. I am soooooo lucky!!!
Thanks for checking in. :-)
Posted by Robert at 3:47 PM
Thursday, November 15, 2007
I saw Dr. Ron Peterson (Cardiologist) this morning. He says I am still having some "beat skipping" and "flutter" issues. He said I am pretty "middle of the road" as far as stroke risk is concerned and to be aware that I will have another AFIB episode in the future -- when is the only unanswered question.
With that he told me to stop taking the Digoxin for now; I could stop (the choice was mine) the Warfarin --but if I do: change my aspirin intake from 81mg to 325mg (a regular "Bayer" type). He said 'in removing the Warfarin, I might see a positive difference in the profound fatigue' I am experiencing. And the risk of bruising and bleeding should be reduced also.
I took this as "good news". He remind me that my PBC is probably the cause of my profound fatigue. And, the Metroperol (which I will continue to take for the AFIB ) - it's a Beta Blocker and the risk of bruising and bleeding easily is a side effect to be aware of.
Next appointment: Dr. Kent Benner, Liver Specialist -- November 27
Posted by Robert at 12:28 PM
Wednesday, November 7, 2007
Tuesday, November 27th seems like light years away!
That's the day I see Dr. Kent Benner, my liver specialist. I am anxious to find out if there are things I can do about the symptoms (nausea, profound fatigue, on and on ...). I would like to find out about going back to work in some capacity. Being at home is not a lot of fun even though it does make dealing with the symptoms of my diseases much easier. Amazingly, you can get "tired" of "being tired" -- but having low energy is a fact. Even doing the smallest of chores has turned into a challenge. And, my "fuzzy brain" gets in the way constantly. I loose track of what I am doing.
I am also dealing with some depression but I know I have lots of people who care and are sending their best wishes my way. :-]
I'm thinking about keeping more information in my blog: diet, including nutritional information and cost; meds and suppliments I am taking; and maybe even expressing my mood and any other information that might be of use to others going through the same things that I am.
Anyway, thanks for letting me ramble. I appreciate your stopping by.
Posted by Robert at 6:43 PM
Thursday, November 1, 2007
Tuesday, October 30, 2007
Test results came back today (October 30, 2007) from tests taken at Dr. Kearsley's office:
- Cholesterol - My LDL was 182. Normal is less than 130. I need to watch my saturated fat intake -- no more bon-bons!
- Electrolites: Good
- Potassium: 4.4
- Thyroid: Normal
- Blood Count: Normal
- Vitamin A: Normal
- Vitamin D: 16 (low) -- start supplement 1000IU
- Liver tests improved:
- Alkaline Phos. (ALP) 483 previous test, 352 this test (normal is <110);
AST 68 previous test, 52 this time (normal is 40);
ALT 95 previous test, 62 this test (normal is 40).
Posted by Robert at 5:11 PM
Friday, October 26, 2007
... she's as wonderful as ever!
Russ drove me to Providence and accompanied me to my appointment with Dr. Jennifer Kearsley at 10am -- helped out where my "fuzzy brain" couldn't. :-]
My vitals were pretty good ... nothing too bad: blood pressure was on the low scale (97/58). Pulse was good: 72. Weight ... well, let's just say I should cut back on the bon-bons.
The profound fatigue is quite normal, as are the other symptoms of the disease I am experiencing. The game plan is to see my Liver Specialist, Dr. Benner, on November 27 and see what he says.
I gave 3 (count 'em) 3 vials of blood for the cause: cholesterol screen, liver function test, checking vitamins levels -- Doctor Jen had a list of 5-6 things she wanted to check -- some of which will save Dr. Benner some time. Anyway, the needle pinched a lot and I gotta nasty boo-boo out of it. Anyone wanna take my place next time? :-\
Anyway, just blogging ... filling out forms ... living ...
I miss everyone at NCNM!!!
** Doctor Jen is my Primary Care Provider. She is with the PACE Clinic (Providence Ambulatory Care & Education). She has been following me since my first day at the hospital, January 23, 2007. She's the best!
Posted by Robert at 9:46 AM