Tuesday, December 23, 2014

Penny's cancer is back. =( We are now almost 3 years since Penny's Cancer diagnosis.



Penny's cancer is back. =(

Penny and I just received the results of the Operative and Pathology report from last Friday's Cystoscopy (her 13th Cystoscopy since February of 2012). The tumor was at the Bladder Neck (@ the 7 o'clock position) and was 3 cm in size. It was designated: "Papillary urothelial carcinoma, high grade". So it was a fast growing tumor. We will determine the course of treatment with her oncologist / urologist on January 2nd....... (hopefully more Valstar Chemo or BCG). Penny has made it almost 3 years with her bladder intact, and the goal is to continue that effort. She can use a few more prayers in her direction.......

So, what else has occurred in the last 3 months? 

September/October - I was taken to the VA hospital to the Psych Ward for observation. I was released after a week there (a very eye opening experience regarding treatment and the lack of help for other vets who are in more dire need than me). I spent my 23rd wedding anniversary (9/11) in isolation from the world, a very lousy experience. The VA facility is essentially, a dumping ground for some vets who are homeless or who can't take care of themselves and where Navy Recruits who get out due to mental anguish get processed for discharge. The VA staff wanted me to do ECT - Electroshock Treatment and after interviewing me, decided my issues were environmental as a result of stress, not physical like someone with a Bi-polar disorder (I was emphatic I would not do ECT unless it was a last resort). So of course, they put me on Lithium.  36 hours after I got home, I was taken to the ER for a Bleeding Bladder. Unfortunately, when the ER nurse put the catheter in, she tore up my urethra trying to force the catheter upon a path that was not the urethra path (I was in so much pain, I was screaming and Penny was crying while begging them to stop). I spent the next 4 weeks of hell having bleeding incidents (I was hospitalized 4 different times). The urologist then threw up his hands and recommended I go to a hospital downtown. I went to the VA instead, and the Urologist on staff there got things somewhat resolved within 8 days. I no longer use a catheter and a bag (and I'm having no more bleeding incidents).

October - Penny's 81 yr old father fell down at his home and was rushed to the Hospital. After that, it was evident he needed assisted living. Penny and I had 6 weeks to get his mobile home emptied, his cars sold, and get him into an assisted living home. With the help of our Church friends, we were able to get this accomplished (despite the 20 years of old "stuff" we had to pore through). Nobody would let me do anything physical, so I tried keeping things moving regarding projects (not an easy task considering the medications I am on).



November - our 16 year old dog "Maggie" (Border Collie mix) had gotten to the point where she could no longer see, could barely stand, couldn't go down stairs, and was going deaf. Along with Maggie's vet, we decided that we needed to stop her pain as her quality of life was very difficult (so she was put to sleep). Given Penny's attachment to her, I found a way to fill the hole by finding an animal rescue organization who would let us "foster" a dog (which we did at the end of November)... another Border Collie mix (her name is Lolly). The rescue pays for the vet bills and for food, and we provide the home and "care".

December2 weeks later, when we went to have her spayed, we were told she was pregnant with 7 puppies. Lolly gave birth less than a week later to 7 puppies (which we are now fostering also - our son is doing a great job of caring for them). Then Penny had her Cystoscopy (and her Cancer had returned). She goes to the Social Security doctor tomorrow (for additional xrays on her knee (that needs replacement). It is simply amazing we have been fighting for her to get Social Security for 9 years........

As of January 1st, we will be officially 4 months behind in our mortgage (this is the only thing we can't afford). Given we are upside down by $100,000 due to the fact the VA will not allow a reduction of the principal, we are looking at foreclosure very soon (and we have run out of options save winning the Lottery). Alas..... the hard part will be to find affordable housing in this area so Travis will continue to be eligible for services here (and can continue to work for Walmart here... where he is accepted and it is close by). Of course, unemployment was never extended by Congress..... but they are willing to fund other pork instead. Oy..... 

So that is the quick breakdown. I am going to try to get back to weekly updates.... as it is cathartic for me to do this once in a while.

Steinar

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May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Romans 15:13 | NIV




Sunday, September 7, 2014

Giving it to God and trusting Him to show me the way.

Only God knows what is truth. I go to explore that truth and I pray that I find it. With God's grace, I'll be here in 2 weeks to convey to others how it went. Otherwise, it was a great ride.

Adieu and God Bless.

Saturday, August 16, 2014

Remission...... =) and the financial cliff...... =(

It has been almost 5 months since I posted to this Blog. The reasons are many, but it really came down to the occasional comments that this blog was more for me than for my wife (who is fighting cancer) and that it had gotten dark.

Well cancer is an insidious disease, I wonder why some people think a blog should be a ray of sunshine?


When I first started posting, the blog was for people (who knew us) so they could have a single place to get information quickly regarding Penny's cancer battle and so people could follow and maybe learn where the shortfalls are and can avoid them (lessons learned by us could spread elsewhere). It evolved into being a place for me (the blog writer) to discuss our family's journey into what most people dare not write about (the hard path regarding the journey that is cancer). Since this affects jobs, finances, friendships, medical decisions, depression, happiness, etc.... I wanted to put a spotlight on those things as many are afraid to bring it to light (or talk openly about it). Some people tried to indicate it was a pity party (without taking into consideration anything but their narrow worldview). We have survived for over 2 years with the help of family, friends, our church, and strangers..... and I would not trade that experience with anyone else in the world. I have been blessed to be by the side of my wife for her entire cancer battle (for over 2 years), and the strength of our Marriage has only improved in the face of adversity. If something gleaned from this blog that can help others (even one person), this journey will have been worth it.

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On June 13th, Penny went for her 10th Cystoscopy. So, we went to the Cancer Treatment Center of America in Zion, Illinois on June 12th in order for CTCA to run labs and a prepare for the Cystoscopy on the 13th. Amazingly, the latest Chemo seemed to help Penny turn the corner as she was released that afternoon as there were no tumors to biopsy (only a small patch of bladder material).... the first time she was released the same day of the cystoscopy since her first diagnosis.

Our call to Cancer Treatment Center last year in mid-year was definitely the right call to make (every cystoscopy up to that point at Sherman Hospital had put her in the hospital for days to recover (and she was not improving). She is now officially clear of cancer for the first time in 30 months (and Penny still has her bladder).... an amazing result considering the journey thus far.

In the interim, Travis was approved for Social Security Disability in April and is now covered by Medicare (which is a HUGE relief considering that he will be disabled for the rest of his life). Now if something was to happen to us (his parents), he has options available to him regarding his future.

Regarding my VA claim, I received a denial (they did not send me to a doctor for a review, even though I waited a year for a decision), so I am appealing that decision using a company to represent me.

Regarding my Social Security Disability claim, I have received a second denial and have applied for an Administrative Law Judge review (which is almost standard nowadays), but I have an excellent company representing me regarding this appeal (so we remain hopeful that this will result in an eventual approval. My medical situation is still a mess as the VA is sending me to many specialists to determine just how "off" I am at this point (my right shoulder, my lower back, my gout, my obesity, my vestibular issues, my Depression/Anxiety/PTSD, etc.. They have found via MRI -  "Partial disc dehydration at L3-4 / L4-L5". "Mild to moderate facet arthropathy on the left at L4-5 / L5-S1". So I have s degenerative arthritis affecting the facet joints at L4-5 / L5-S1.

Also, On Saturday (August 2nd), we received 2 letters from IDHS....... indicating due to "Your eligibility cannot be determined due to your FAILURE to provide necessary information". The people dropped off Medicaid? My wife and son (I still have it... along with VA Healthcare). Stunning........


Mind you, we have provided everything they have requested (I have 7 binders of documents which I brought with me to DHS last December... of which they copied everything necessary to make a decision). Get this, I still have Medicaid (and all 3 of us were on the same case file). So we went to the Illinois DHS on August 4th to ask to see someone to find out what they allegedly didn't receive. After standing in line for 90 minutes, we get to the window. We are told that we have to appeal the decision. I asked, what is the appeal based on (what didn't they receive)? She says........ "I don't know", but for us to file an appeal. Then she indicated there was nothing more that she can do. I asked her how can we find out what the missing information is (because one can never get a live person calling their or the Springfield. IL. office... and when one does, they want us to go to the local office.... which we were already at). She then got the hint we weren't walking away with a dismissive "I don't know".


I asked..... how can a case covering 3 people accept the head of household for medical benefits, but reject the disabled spouse and disabled son after they waited a year for a decision (without being told what the definitive reason was for 2 of the 3 people to not be eligible for the same medical benefits)? How can a household get different decisions when all of our information is the same regarding income (which is the only criteria besides having medical insurance through another party)? Finally, she walks off and talks to her manager and comes back 10 minutes later asking us to come back tomorrow with all of our files/documentation and wait for a Customer Service manager to sit down with us. 


So Penny and I went to the DHS office the following day, we waited over 3 hours and when we got to the Customer Service Rep, the system they use was "down". So we had to go back again on another day.


Travis and I went to the DHS office (my 3rd visit in 5 days) on August 8th. After 90 minutes (we were 3rd in line), the re-assigned caseworker told us that the previous caseworker "made a mistake" and they were fixing that mistake today or Monday by approving Penny and Travis' Medicade coverage. Disaster has been averted and we can now concentrate on Penny's continued cancer treatment plus our mortgage / living situation.


Our Illinois Hardest Hit has ended (on July 31st), so we are now officially facing the financial cliff. We have no means to pay our mortgage, so we are now looking at the possibility of bankruptcy. We'll need a prayer for that one.


Penny's next Cystoscopy is scheduled for the day after our anniversary, so we will be at the hospital drawing labs on our anniversary. It isn't the first time Penny has been hospitalized on that day, but we are hopeful that we will have something to celebrate (the continued lack of cancer) during her recovery from that procedure.


That's about it (for now). I'll be posting a 2 1/2 year overview blogpost in a few days so anyone following can see what our road has been like (via bulletpoint) so one doesn't have to read the entire blog.


In the interim, God has blessed us and we continue to praise Him for all of our blessings.


Steinar and Penny Andersen / plus Travis.   =)






Tuesday, March 25, 2014

Cancer.... returns.....

Regarding Penny,


Penny's cystoscopy 2 weeks ago........ opened Pandora's box (hence the reason for not having written anything in the past 2 weeks as it has been hard to absorb / articulate).


There was definitely cancer cells (very evident to the Urologist), and he removed them and had them biopsied. We found out last Friday afternoon that they were "High Grade papillary urothelial carcinoma with invasion into subepithelial connective tissue". We discussed with the Urologist, the "options" last Friday. She is to undergo another round of chemo (this time, she will be getting treated with Valstar <Valrubicin> - 6 straight weekly treatments). We are hoping that will resolve this latest spread of cancer. If it doesn't, Penny is looking at a Bladder-ectomy (removal of the bladder) and all that entails. She has been told, if the cancer is still there at the next Cystoscopy... that in order to prevent it's spread, that it is in her best interest to have her bladder removed... otherwise, her condition could turn terminal. It was that very thing that hit both Penny and I hard. Penny has showed such resiliency / bravery regarding her condition and I only hope to be as such if I was to ever come down with such a diagnosis (she has endured so much in her life, she is an inspiration to me and those whom we know). We will get through this with God's helpful hand. If it wasn't for the support of our church friends, friends, and family... this would be so much harder to go through. 



Regarding Penny's father,


It has been over 2 months and his services have ended (through his Insurance Company). We are still trying to get the Neuro-psych evaluation done (his attending physician has put in the order, but we are still waiting on "Healthspring". With Penny's additional treatment coming up, we are at a loss as to how to continue being the solution when he is so adamant that he is "fine" when he isn't.


Regarding me,

I spent over 4 hours at the VA last week (the Neuro-psychologist testing). I will be going back to Lovell on April 2nd in order to do the follow-up with the Neuro-psych regarding their final assessment (which includes the results of the Audiology department) plus I am to be fitted for a CPAP machine to deal with my "severe sleep apnea".

It appears that congress is still going to keep extended unemployment benefits hostage to the political process, so we are now looking at the worst case scenario..... bankruptcy (as the doctor still states I cannot "return to work" and the VA / Social Security are still reviewing my Disability case). So, we are at the end of that rope......

Alas.....

Philippians 4:6-7
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.
And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.

James 1:2-4

Consider it all joy, my brethren, when you encounter various trials knowing that the testing of your faith produces endurance.
And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

Matthew 6:34
So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.

Wednesday, March 5, 2014

Travis is finally approved for SSI (Supplemental Security Income), and life continues. =)



Regarding Penny,



Penny's cystoscopy is in 2 days. We are preparing for the trip to Zion and being away from home for two to three days (with Travis being the only person at home). I am very concerned she is overwhelming her physical well being by trying so hard to accomodate her father regarding his needs. I hope this doesn't sound selfish (but it is... I know as I love my wife with all my heart and I am seeing her try so hard to give to her father with the time they have left while... but I don't want to lose any days with her as a result). Very selfish of me...... =(  but  can't help it. I am presently watching a documentary called "LuLu" on WorldChannel (a PBS alternative station). It is about a world reknowned medical researcher (Dr. Louise Nutter) who lived life hard and who also created drugs to combat illness (including cancer). It has me thinking about how much time one has left in one's life. I feel like I am slowly wasting away while trying extensively to keep ourselves stable in a sea of chaos (with the cliff always around the corner). It seems to me that Penny and I are seemingly never going to have the opportunity to just "relax" in our lifetime as there is always something we have to battle for (as it has been for the past 24 years). I really need to sit down with my Bible and meditate / pray on this........ and yet, the medication I am on seems to be the only solution to calm me down enough to not cry. I am spending a lot of time with depression, and it isn't getting any better while we keep dealing with situations that are difficult to resolve.



Regarding Travis,
 


Travis and I walked into the Social Security office in Woodstock on Monday as it was about to close (we had received a letter indicating that I had talked to someone at their office on Feb. 26th... the thing is, I received no such phone call). They had decided that Travis cannot manage his funds and that he required a representative to manage his funds, and they picked me). So we talked with the Social Security rep behind the counter and Travis decided that I will be the representative given my handling the family's finances already. And then, we asked the status of the claim and found out that it is APPROVED!!!!!! =)




Normally, the SSI amount is slightly over $700. Unfortunately, the financial formula for those who are working Part-Time is such that they get minimal funding (in Travis' case, around $110 per month as they deduct over $240 from the $700 using the formula what he gets help on from his mother and I). So now we need to sit down with the young lad (and get help from an attorney) to establish what he will contribute to the household. Ever since he started working via District 300 six years ago, we have not asked him to contribute to the household. That may have been a mistake when using hindsight (as he doesn't understand what it takes to manage a budget for daily living). We will be praying hard on this issue.


Regarding Penny's father,

We are now into Week 3 of Penny's father temporarily coming to live with us. The situation is such that he is not improving (he thinks he is, but he honestly isn't). His single goal is to move back to his mobile home. Penny and I are very frustrated as he is not being truthful to his caregivers and has many unrealistic expectations. It is like we are fighting molasses regarding his need to be on his own (given his inability to do so) and we constantly argue about the same issues. Despite the evidence, we are accused by him of making it a bigger issue than it is (when it is actually much worse than he believes it to be). So he spends his time answering medical questions as if he was a 30 year old - young - and spry (and he will not mention his issues when asked or omits information so the medical professional doesn't pry further). This is making it harder on Penny and I as he is constantly changing his mind regarding his future (his illness and emerging dementia are part of the problem). His home healthcare medical team is intent on only working within the confines of what time frame has been allowed by the Insurance company. They continually give him platitudes that he is doing great and should be released from the need for additional care (sabotoging our efforts to get him the help he needs as he clings to anything positive as evidence that he is perfectly fine). We are desperately trying to get a Neuropsych consult done to determine his future care and to get an unbiased opinion / evidence of his present condition (and to have established what <if any> limitations he has mentally and physically) so we can have the answers needed for future care. We believe he is a danger to others if he tries to drive. His doctor agrees. He doesn't seem to care though (he is more concerned about independence than for who may be harmed if he is unable to react normally to any traffic situation). His Parkinson's disease is not mild, he is still very stiff, his right arm shakes extensively when he is not looking, and has weakness in his left arm and his left leg. He is unable to zip up his coat or put on a seatbelt without help (and is one fall away from a broken hip).  And his house is a disaster area that will take weeks to clean up (Penny and I are in no condition to do this)..... meanwhile, we now have a person who is adding to our costs of living (and yet, he is unable to help us with any of those costs as he is keeping his mobile home - even though realistically.... he will not be able to live alone again). The irony of this fact is that next month, we won't be able to pay our mortgage nor our car payment (due to my continued unemployment and no income) does not register in him. Instead, he just continues to complain about the fact we keep our furnace at 69 degrees (while he keeps appliances, TV's, and lights on in every room he leaves). If it seems like I am being petty, imagine having a 16 year old that doesn't listen to a thing one says (and demands that we adhere to their requests) and does what they want to do anyways..... it is unfortunately like that.
 
Regarding me,
I again spent over 7 hours at the VA on Friday (with the Audiology department).
  • Audiologist - So the tests on Friday was the spinning chair -  V.N.G. (Videonystagmography) test and then the V.E.M.P. (Vestibular Evoked Myogenic Potential) test this afternoon.
    • On March 13, I will be going for a C.D.P. (Computerized Dynamic Posturography) test.
I also saw the Psychiatrist this afternoon and brought her up to speed regarding everything I've dealt with in the past 2 months. At this point, it seems to me that all she can do is treat my symptoms (but can do nothing to resolve what I am going through). It will take the VA psychologist's efforts to help me find coping mechanisms for me to be able to eventually function without medication. Penny pretty much knows now when I haven't taken my medication yet, as she sees me "jumping out of my skin" (as she puts it).... she sees me getting very frustrated easily (and then I take my medication and then I get so tired and yet, can't sleep). it is a very frustrating cycle, especially since it snowing every couple of days and getting bitter cold on the other days (we are literally stuck in the house as we have no funds to go elsewhere).


I am frustrated about so many things, and I really need to sit down with God tomorrow and engage in some serious prayer (as I truly need to give it to God).


As I have said before, by the grace of God go I... as I am dealing with this as best I can (I just wish I was handling all of this better than I presently am).

Friday, February 28, 2014

The latest at the Andersen household.....

Regarding Penny,
 
So we are getting ready for Penny's next Cystoscopy (on March 7th). We are praying that the results will be negative and that she has beaten her cancer for another 3 month period. We are praying hard for another 3 month miracle.
 
We are now into Week 2 of Penny's father temporarily coming to live with us. As he is eligible for home health care, we are starting to see activity regarding a home health nurse stopping by (in addition to Physical Therapy). We stopped at his Attending Physician (who talked to him about his Parkinson's Disease and limited memory / physical abilities). He is now aware via the doctor, that he can't live by himself anymore and that he can no longer drive. Unless he physically / mentally improves, the situation will only see him slowly getting worse over time. We are preparing for that eventuality, we just don't know when it may happen (months or years). Our issue is that with my maladies,  Penny's many disabilities, and Travis' limitations.... if her father's condition continues to degrade, we won't be able to care for him as he needs for excellent quality of life. He absolutely loathes facilities that are there for Seniors (and I understand his concern / worry), however... it is a lot of responsibility to shoulder (not to mention the fact we live in a 2 story 110 yr old farmhouse that is not equipped to handle anyone who has limitations... and we only have 1 small bathroom). We don't mind the responsibility (and welcome it), it is recognizing that we are not healthcare experts and may not be the best solution for his needs. We do not have the activities and facilities at our house (that help older seniors to live an active lifestyle). He is essentially sitting in our living room or in his bedroom (watching TV). Penny is in no condition to be a caregiver.... and it is breaking her heart. We are making do as best we can (with prayer and patience).
 
Regarding Travis,
 
We are still waiting for his Social Security Disability decision. Apparently, it is now at their Quality Assurance office in Chicago awaiting a review of the SSD decision. It isn't helping that their search for assets regarding Travis isn't being resolved (Travis has savings bonds that he reported to the Social Security Administration as he was required to do so), unfortunately... his Uncle in Michigan has the Savings Bonds and will not provide Travis the information needed to give to the Social Security Administration (he allegedly is afraid Penny and I will turn in the bonds before they mature and insists that he is in control of those bonds until he releases them). We have no clue why he thinks that. All we were asking him for was for the information (to present to the Social Security Administration). Now, we will have to get an Attorney to get the answers (as Travis will not receive any benefits until the information reaches the government). One just cannot make this stuff up....... =(
 
Regarding me,
 
I spent over 7 hours at the VA on Tuesday. Starting with Blood letting (4 blood tests with a total of 7 vials drawn... by Nurse Ratchet who couldn't find a vein to save his life), then general surgery, radiology (for x-rays of my feet), audiology, rheumatology, podiatry, orthopedic, pharmacy, & neurology.
 
Why?
 
I fell last week (which contributed to my hernia repair ripping and returning). So they are trying to get to the bottom of why I am falling (8 times in the past 2 years).
  • Neurologist - So one of my blood tests is for something called "X reflex" (a blood test to look for a genetic marker... ordered by the neurologist). He also ordered the neuropsych test to determine the extent of my memory plus neurological issues (I failed a preliminary memory / cognitive test).
  • Podiatrist / Radiology - I then got an X-ray for "plantar fasciitis" in both feet (my arch is in tatters regarding my tendons) . I then received a brace to stabilize my right foot (which is the worst of the 2 feet). I now need to get a new set of shoes (2 different sizes to accommodate the brace).
  • Audiologist - They want to see me for my falling (checking the inner ear). A total of 9 hours of testing (6 hours this Friday) and 3 hours on March 13th.
  • General Surgery - I saw the General Surgeon and he ordered a CT scan with contrast to see how bad the ventral hernia repair is now (I may need to get another surgery to repair the damage). I took Barium tonight and will go to Lovell Hospital on this morning for the CT scan. The surgeon put me on no lifting for the next 8 weeks due to the hernia issue.
  • Orthopedic - The ortho surgeon put me on "no lifting" for the next 18 months (due to my shoulder).
  • Rheumatology - My gout looks like it is controlled (and they ordered labs for my liver and kidney levels regarding the allopurinol I am presently taking) plus the anti-depression medication I am on. . They need to keep a close eye on my liver as allopurinol eventually causes Liver issues in many people.
  • Sleep study - I also got a call from Lovell Wednesday and the results of the sleep study are in. I apparently have "Severe Sleep Apnea" (my breathing stopped an average of 97 times per hour and I was told the tech was so worried about me, that he came in a couple of times when breathing stopped longer than a minute). So I will be getting a CPAP machine in short order.
At the end of the day, this will determine why I am falling and if there is a possible diagnosis for what I am going through (my symptoms are seriously looking like MS symptoms.... and the VA doctors are finally taking me seriously). The symptoms are evident (my brother and the former President of CGL have seen me fall), and the last 2 falls caused shoulder damage and now a recurrence of my ventral hernia.
 
Combined with my Major Depression / PTSD / Anxiety issues (which I am not allowed to "return to work"), I am no longer allowed to even try to get a job.... so the VA will work with me to present me to prospective employers (with the limitations placed on me). The neuropsych will be determining if I am still allowed to drive or not :( (I'll know within the month).
 
By the grace of God go I... as I am dealing with this as best I can (at least, I don't have a terminal disease diagnosis). *Bonus*
 
The only problem at this point is Social Security and the VA still are backlogged regarding my Disability claims (and with no income, I am in one hell of a catch 22 situation as I am not cleared to return to work).
 
Oy.
 
God has provided and I have faith that all will be resolved in God's time.
 
Dear Lord, as my loved ones and I await the results of medical tests about our afflictions, let us offer you our anxieties for our good and your glory.  Calm us in our worries, knowing these don’t add wisdom but rather stress to this situation.  Enlighten us, though the power of your Spirit, to make wise decisions as to treatment. Help us not to turn away from You in these fragile, painful moments, but rather towards you for grace and strength. Comfort us in seeking you now as we place all our concerns in your loving hands as we say “Thy Will Be Done.”
 
1 Timothy 4:8
for bodily discipline is only of little profit, but godliness is profitable for all things, since it holds promise for the present life and also for the life to come.
 
 

Friday, February 21, 2014

Post surgery and keeping faith. = )



We've had a very busy few weeks (and hardly any time to sit down and put fingers to a keyboard).... so now that things have slowed down long enough to sit down for longer than a few minutes.... here goes.

3 weeks ago, I lost my cousin to a heart attack (as a result of his fight with cancer). This was a Godly man who gave more to his family and this world than most men I know (an Honorable man). He passed away the day before my surgery, so when I was done with the surgery, Penny and I stopped by his widow plus his daughter to convey our respects (and we went to the funeral a few days later so we were able to see the rest of the Nordhem/Norheim family for the first time since my mother's memorial over 4 years ago)..

Regarding my Ventral Hernia operation, it was as painful as I thought it would be (but the recovery process was.... complicated as a result of us having so much to do). It was a necessary operation tho... as it was very difficult to engage in any physical activity without feeling pain. The orthopedic doctor (regarding my shoulder) and the surgeon (regarding the hernia) have told me I can't engage in any lifting for the next 18 months, so combined with the Psychiatrist who indicated I cannot return to work.... it would appear I have no work options available to me. This incredibly difficult for me to deal with considering our present financial situation (as I've always worked my way through such issues by finding a way to work on something to help bring in money).

During that time, Penny's father spent 7 days at St. Alexius Hospital in Hoffman Estates at the end of January (he had Pneumonia and also needed to be treated for his Parkinson's disease). He then went into Alden Poplar Creek rehab facility in Hoffman Estates for 10 days in order to get his strength back and to assess his present physical / mental capacity. It took 4 days (and multiple phone calls) to get approval for him to be at Alden. During this process, we found out just how bad Medicare Replacement Insurance Plans are (he has "Healthspring" so we essentially were told "no" to almost everything we tried to have done). He is still waiting for approval to see a Neuropsychologist (as from our perspective, he is severely limited in his ability to take care of himself). During that time, we needed to organize his finances (his major bills had not been paid since last July), so using his funds... we needed to repair his car (2 flat tires, a broken sway bar, broken stereo, and extremely dirty exterior/interior.... so we replaced all 4 tires, the sway bar, and the stereo with his funds plus we had the car cleaned at Delta Sonic). I spent many hours price shopping in order to keep the costs down plus bring his major bills back to being paid on time. His memory is impaired to the point he isn't remembering to pay his important bills and we are constantly repeating ourselves regarding his questions (in reference to answers)  

We also had to get our house ready for Penny's father to come to our house for an extended visit once he was released from the Rehab facility (while we figure out what his long term living situation will be). So my office on the first floor needed to emptied of my office things and we had to get a bed for it so my father in law had a place to sleep with us. We had help from our church life group (4 men who came over to move the 4 pieces of larger furniture and moved them up to Penny's office). 

As Sears dropped the ball regarding an online purchase of a daybed (they didn't deliver all of the parts), we had to go to Ashley Furniture and we found a daybed for $450 including delivery that was solid enough for Penny's father to be able to get out of the bed without assistance (they delivered it and it was missing the bolts to assemble it... so I went to Ace Hardware to get 16 bolts and we assembled the bed together... and that is when my hernia recurred, when I bent down to tighten a lower bolt... so now I have the same hernia as I did before the surgery). I am not very happy with myself. So, Penny's father was released yesterday and will be staying with us for a while.

Now the hard part.... he is still in denial as to how extensive his limitations are. He still wants to drive, despite the fact he cannot put his own seatbelt on and can barely get into the car without help. The mobile home he lives in needs extensive cleaning and he keeps pushing Penny to do the work so he can save money (despite the fact that the work needed is extensive and the fact that Penny's cancer fight should not be complicated with her trying to clean a germ laden / dirty mobile home when she is not physically capable of doing so).

The fact my hernia recurred as a result of our effort to help her father is my fault (we tried to have the bed assembled by professionals, but both times... the bed arrived missing the parts necessary to complete it). But we should have told her father to wait to leave the rehab center until someone could assemble the bed instead of my trying to fix the situation in order to get him out of there like he wanted. I need to learn how to say "wait" when it can result in my physical condition taking a turn for the worse.

I have learned my lesson the hard way, and hopefully, the surgery will be redone (and I will not do any physical activity for a month no matter what I am asked to do). Hernia's can only heal after surgery if stress is not put on the affected muscle.
As for Penny's father..... Penny and I are in no physical condition to engage in long term care for him (that involves lifting and other physical care), we are walking a fine line regarding what we can do and we need to find a solution that doesn't involve our sacrificing our physical health in order to make up for his lack of ability to engage in daily activity (he needs professional care). I hope this doesn't sound like we are complaining, he needs to acknowledge his limitations and allow himself to be cared for by professionals instead of engaging in denial and forcing family (by fighting all efforts to get him help) which only will contribute to that families already deteriorating quality of life. And truly, he needs to stop driving as he is a danger to anyone on the road (his response time is limited, his Parkinson's makes him very stiff, and his tremors are getting worse). We are so worried he will hurt someone (which is why we are pushing for a NeuroPsych evaluation to assess his physical / mental capacity).

I also was saddened by the death of a friend I used to work with, Kevin Koerner passed away a few days ago. He was an honorable man and was a tenacious man. His attention to detail was legendary and many learned the ropes of the logistics industry from him. He was and always will be "The Colonel" to all of his friends and peers/co-workers. I didn't interact with him too much away from work (we lived very far from each other), but we spent many days and evenings talking to each other regarding work issues/solutions plus our familial issues (he loved his wife Cindy and did everything he could to raise his children as best he could). There is not anyone I know who has a bad word to say about the man, and when I am at his funeral in a week, I am sure that it will be well attended with many who honestly will be there to pay their respects (and who genuinely miss him).

Monday, January 27, 2014

Ok, the arctic can turn off the deep freezer now..... (that, PLUS updates).

This winter has caused some serious cabin fever. I feel like I am back in Norway (I can't get anything done outside as it is either snowing or it is too windy/cold).




This morning's snowfall pushed the month up to the third snowiest January on record (in our area).  Two new inches brought this month's snow accumulation to 32.5 inches. Add in November and December and the season total's up to almost 48 inches now.

Forecasters said Tuesday morning temps are shaping up to fall in the 20 below zero range with wind chills equivalent to a dangerous 30 to 40 below reading.


So tomorrow, I have to go to the VA clinic in McHenry (and I have to clear out the snow that went into the car due to the crack in the plexiglas window). I really need to get that replacement used convertible top onto the '98 Sebring (I just need a break in the weather)....... especially before rain comes back in March. =( 

On the medical / Social Security / unemployment newsfront:

A decision was made on Travis' Social Security Disability on 01/17. We were told by the adjudicator that if we didn't receive a letter within a week.... to go into the Woodstock Social Security office to get the decision information. We did so yesterday... and found out that Travis' case file was pulled by the Chicago SSA "Office of Quality Performance". This means the final decision is now again pending (and can be pending up to an additional 120 days). So it drags on due to their "Quality Control" office...... only can a Governmental entity turn an obvious decision into a further excruciating wait. We are going into Prairie State Legal on Tuesday to see if we can get help in lighting a fire under Social Security's feet. As an aside, we were told that Travis cannot handle his own money so we need to get into place a guardianship as soon as possible. Given that statement, it would seem they think he is disabled, and yet they would delay benefits just to satisfy their need for checking the adjudicator's decision making capability??????? One just can't make this stuff up...........

I just received a letter from IDES yesterday (the IDES Security Division). It would seem, we as a family are being targeted (first Trav regarding his SSDI case being quality reviewed, and now me regarding unemployment). IDES is asking if I applied/searched for any jobs from 11/3/2013 to 11/9/2013 (the interesting part is that I was in the ER during that week). Nice try IDES, I DID apply for multiple jobs that week (and even have the emails showing receipt to prove it). You see, I actually DO apply for jobs (and have proven that during the previous 3 security audits). You'd think they would concentrate on the people who have not demonstrated any activity on Joblink (I have proof there also). I appreciate that the State of Illinois is trying to prevent fraud (and I am thankful for the unemployment while I received it), however... at this point (especially since I stopped receiving it on 12/28), it is feeling like a witch hunt.

Penny is finally starting to recover from her terrible cold (flu / pneumonia / bronchitis) and is starting to feel better after almost 2 weeks of her feeling terrible. Unfortunately, her bladder is starting to hurt again... so we are "concerned".

I go in for my sleep study tomorrow evening (and will be spending the night at the hospital / sleep center). And then, I will be getting surgery on February 3rd, my ear / balance / hearing / audio testing will be both on February 6th and 10th (so my medical visit schedule is full). When that is done, neurology will be revisited to discern if there is a problem (why I am falling).

In the interim, our income is at nil (my unemployment ended in December) and I just finished paying off all of our bills using the rest of the fundraising funds that we had left (utilities are paid through the middle of February... as are all of our other bills. We are looking at a possible tax refund, but we won't receive anything for at least 6 weeks from the Federal Government IRS department from when we file (we are still waiting for an IRS form 1099-R from my former employer and a 1098-MA from the "Illinois Hardest Hit" fund... and we may not get them until the first week of February.

We are down to our last $100.00, so it is going to get very real for us with no income stream......

All we can do is pray for a solution (we know God has a plan and we are so grateful to Him as he has provided us so much blessings the past 2 years since Penny was in the Hospital). I almost feel selfish to pray for help given the need in the world that is out there, I pray for his wisdom and patience regarding this turbulent time in all of our lives.




Exodus 15:2 
The LORD is my strength and my defense; he has become my salvation. He is my God, and I will praise him, my father's God, and I will exalt him. (NIV)


Joshua 1:9 
Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. (NIV)


2 Chronicles 15:7 
But as for you, be strong and do not give up, for your work will be rewarded. (NIV)


Psalm 27:14 
Wait for the LORD; be strong and take heart and wait for the LORD. (NIV)
Psalm 28:7
The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him. (NIV)
Psalm 29:11
The LORD gives strength to his people; the LORD blesses his people with peace. (NIV)
Psalm 59:17
You are my strength, I sing praise to you; you, God, are my fortress, my God on whom I can rely. (NIV)
Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (NIV)

Daniel 10:19
"Do not be afraid, you who are highly esteemed," he said. "Peace! Be strong now; be strong." When he spoke to me, I was strengthened and said, "Speak, my lord, since you have given me strength." (NIV)
Isaiah 12:2
Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD himself, is my strength and my defense; he has become my salvation. (NIV)
Isaiah 40:31
but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (NIV)
Mark 12:30
Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength. (NIV)
1 Corinthians 16:13
Be on your guard; stand firm in the faith; be courageous; be strong. (NIV)
2 Corinthians 12:10
That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (NIV)
Ephesians 6:10
Finally, be strong in the Lord and in his mighty power. (NIV)
Philippians 4:13
I can do all this through him who gives me strength. (NIV)
1 Peter 5:10
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. (NIV)

Monday, January 20, 2014

It's official, the doctors won't release me to return to work.

And I am really despondent about that. I can't even pursue employment now due to the nature of my illness.



So, my x-rays showed:
  • "extensive calcific tendinitis of the supraspinatus tendon".
  • "mild acromioclavicular degenerative joint disease"
According to my Primary Care Physician at the VA, my EKG showed my Heart is enlarged... (he then looked at my Testosterone which was 304.... very low and contributes to a enlarged heart along with being heavy) so I now have to account for this regarding my health.

The doctor limited me to lifting 10 pounds (and not lifting with my right arm due to my shoulder).

Also, my Psychiatrist has diagnosed me with:
  • Mood Disorder (296.90)
  • PTSD (Provisional)
  • Gouty Arthritis, Hypertension
The Attending Physician document she filled out was stated with the following"
    • "Has your patient been released to return to work" - "No"
    • "If the employer can accommodate the patients limitations, do you support return to work at this time?"- "No"
    • "If the employer can accommodate part-time work, do you support return to work at this time?"- "No"
So, essentially.... I am not being allowed to work (despite the need to do so in order to provide for my family). Seeing that in writing really brings the seriousness of our situation to the fore. I am now unable to provide for my family in the manner I have done so for over 30 years, and that is a stunner.

So later this morning, I will be taking Penny to the Social Security Administration office in Woodstock to also apply for SSI (since I am no longer receiving unemployment, she is now in the same situation I am regarding "household income") and to find out if they are still working on her "Res Judicata" SS Disability case from 2005 (that we are still waiting for an answer on).

Penny's Pneumonia/Bronchitis is slowly getting better (14 days of illness so far, very concerning to us), so we continue to pray that it will get better and soon.

We just paid our bills up to February 1st (Car Insurance, Mortgage, Natural Gas, Electric, Medicaid Premium, etc.) so we are now facing the financial cliff. And a larger cliff I haven't seen in all my years on this Earth.

But knowing God is watching over us, I cannot help but take solace in knowing that he has our back (and is watching over us knowing our needs).

As we wouldn't have made it this far, without HIM. =)