Thursday, June 20, 2013

Tomorrow is day 1 of chemo for Penny

So, we are driving to Cancer Treatment Centers of America in Zion tomorrow morning for Penny's first chemo treatment. Instead of a "port", it will be administered by catheter/foley.

We will be doing this for the next 6 Friday's.

We are hoping for 3 things.

1. That the treatment results in a negative cystoscopy in September.
2. That Penny does not get ill from the chemo.
3. That Penny doesn't lose her hair in the process.

When Penny had the BCG treatment last October/November, she started being adversely affected by week 4. This time (at CTCA), we hope that the supportive services that CTCA provides (plus the vitamin supplements she is using) will help minimize adverse reactions.

In the meantime, I am hopeful that my gout attack has minimized by tomorrow morning so I am ready for the walking involved in getting around CTCA with Penny (I am so thankful to God for the blessings of my being able to be with Penny at all of her hospitalizations/appointments for the past 16 months and I refuse to let this pain get in the way).

Any and all prayers will be appreciated.

~ Steinar

On the road again. :-)

3 days of hell ~ living with Gout / Flat Feet

Gouty arthritis.

The scourge of Humanity I believe is Gout. I've been holed up in my house for about 3 days with yet another Gout Attack (very frustrating), especially since the past 3 days have been so beautiful (temps in the low 70's and blue skies) and I have so much I need to do around the house. I've been getting the attacks since I was in the Marine Corps during the 80's (I also have flat feet... literally no arch and 7 years in the Corps destroyed them regarding impact exercising... to the point I could barely run 3 miles in 28 minutes by the time I got out). I was never fitted for proper footwear during my time in the Corps (and we ran with leather black boots... not the most comfortable as I was always getting blisters plus Plantar fasciitis). I usually sucked it up and just dealt with the pain. After I got out in 1988, I wasn't able to jog / run anymore as it would cause too much pain (which has affected my effort to fight my weight ever since then).
Right now my left foot looks like it had an anvil dropped on it. Every time I try to do extensive work around the house plus when I am dealing with stress, my feet start to swell (and if I bump my foot/toes on occasion, then the affected area starts to swell). I usually get a low grade fever at the same time (and sometimes it turns into a full on flu like symptoms).  

My left Big Toe and the toe next to it swelled up (including the top of the foot in front of my ankles which make it hard to bend the foot to walk). Essentially, the foot turns into a walking exposed nerve.

You can see the swelling in the left foot, and the bruising on the right foot (and what looks like a bunion on the right foot by the joint of the Big Toe is actually swelling of that joint).
I no longer drink beer (much to my dismay), I avoid pod like vegetables (anything which will increase my uric acid levels), and I only eat Turkey on Thanksgiving (and I avoid a large helping so I won't suffer the following week).
I used to take Indocin, but that horribly affected my stomach, so for the past 20 years...... I've been using Extra Strength Excedrin (250 mg acetaminophen / 250 mg aspirin / 75 mg Caffeine). When Naprosyn started being sold over the counter (Aleve), I then combined 1 tablet of Aleve with 2 tablets of E/S Excedrin (a cocktail of medication)... in addition, I would occasionally drink Black Cherry juice.
The best description I have read on this subject is as follows (from the wiki "Gout" entry):
In 1683, Thomas Sydenham, an English physician, described its occurrence in the early hours of the morning, and its predilection for older males:
Gouty patients are, generally, either old men, or men who have so worn themselves out in youth as to have brought on a premature old age—of such dissolute habits none being more common than the premature and excessive indulgence in venery, and the like exhausting passions. The victim goes to bed and sleeps in good health. About two o'clock in the morning he is awakened by a severe pain in the great toe; more rarely in the heel, ankle or instep. The pain is like that of a dislocation, and yet parts feel as if cold water were poured over them. Then follows chills and shivers, and a little fever... The night is passed in torture, sleeplessness, turning the part affected, and perpetual change of posture; the tossing about of body being as incessant as the pain of the tortured joint, and being worse as the fit comes on.
All I know is that it makes life absolutely miserable and it is evident when I walk into a job interview... which does not help show me in a positive healthy gait. 

Monday, June 17, 2013

This legal immigrant is astounded at today's Supreme Court ruling

My opinion is given at my Immigrant Blog:

Sunday, June 16, 2013

The unfair Social Security Disability benefit process

So here is Penny's Social Security issue in a nutshell (as we get asked this question a lot).... so I hope others can get an idea of how tricky filing for Social Security actually is.

Penny has been disabled (through no fault on her own) multiple times in the past almost 22 years we've been married.

She was a waitress when I met her and she loved waitressing. In 1991 (3 months after we married on 9/11/1991), she slipped on a wet floor in the Kitchen at the restaurant she worked at (JB Finnegan's) and she had ripped the medial meniscus in her right knee. The restaurant had been asked to put a rubber carpet in that area, and they never did. Penny slipped on water on the floor and went right down. Luckily, I was working for Metlife at the time, she had insurance via my employer and she went for surgery. Of course, the restaurant allowed their Workers Comp to elapse prior to her injury, so we had to fight for her medical care and for lost wages (ultimately for 7 years our lawsuit worked its way through the process). In the interim, she started to work for Walmart in 1994 - 1999 as a cashier (and she slowly developed Carpal Tunnel Syndrome). She then started to work as a Home Daycare provider until she was shot April of 2011 on Good Friday at JB's Pub in Elgin, IL. (the first two people that were shot were killed, she was the third one shot and she survived with a major left arm wound). She lost the ability to use her left arm and hand after that. Miraculously, we found a doctor who could repair the damage to her arm that would allow her to use her hand again (not like before she was shot, but good enough to manipulate objects, use a fork and knife, and to lift a glass). She had surgery on her left arm on our 10th wedding anniversary (9/11/2001) that morning to move her nerves and connect them to her thumb and other fingers so she'd be able to use her hand. She went through 2 years of rehabilitation. She was able to rehab enough to get a job at TCF Bank (as a teller) despite her fear of the bank being robbed and worked full time for over a year (and luckily, she had Disability Insurance coverage since she was a full time employee). When putting money into the bank's ATM, she had injured her knee as she fell. She went on short term disability through the employers Disability Carrier. She then went on to long term disability after that as her physical condition kept getting worse. She applied for Social Security and has had surgery and follow-up medical treatment. She did not have a legal representative when she went to the ALJ hearing in April of 2008 as she thought the medical evidence was overwhelming (and we were still dealing with the legal issues from 2001 separately plus I was at a new employer and had no vacation earned yet to take the day off). Her last Social Security decision was 10/2008 (at the administrative law judge level). When we received her denial, we contacted Allsup & Associates (who was contacted by the Standard) forwarding the denial to them by fax and asking for their assistance. We never got a response. I again forwarded the denial by Fax in February of 2009, and still received no response.Considering that the Administrative Law Judge had basically called her a malingerer in the denial (the decision makes for incredible reading), she felt only a representative could help her and Allsup didn't (for whatever reason). She was approved by Standard Insurance for functional limitations for any occupation based on Training, Education, and experience. And yet the government thinks otherwise.

So on November 2nd of 2012, we checked with her disability carrier and again asked for representation to re-file and start the process over to get Social Security for her (since I was now unemployed and she needed Medicare if Cobra wasn't approved or we couldn't afford the cobra premium). We were then told that due to a recent law change, that the ALJ decision in 2008 was the final decision because she hasn't worked since 2005 and her eligibility for SSD ended in 2006 due to her hours worked during the previous 10 years (if she had filed a request for a review within 60 days of the last decision, it would have went to the fourth and final review level). Essentially, if she hadn't worked in 2004/2005 and had pursued the SSD case then, she would most likely had a different outcome. Instead, she did what she was asked and rehabbed her arm so she could go back to work.

She was never told that she had no more options until November 02, 2012 (by anyone), and now because she worked so hard to do the right thing.... she is not eligible for Social Security Disability due to a change in the law (a technicality).... and being afflicted with Cancer, she now has no options until the age of 65. but it gets even better...... because of the fact she isn't receiving Social Security Disability and isn't working because she is actually disabled, her Social Security Retirement amount will be less than half what she would have gotten as they will be counting ALL years since she started working (and without SSD... which is counted as a continuation of earnings, she is will get a substantially less amount at the age of 65 as she will have over twenty years of no earnings).
And that is our Social Security story about Penny. Tomorrow, I'll post about Travis and his situation.