Archive for February, 2017

Where have I been and Why haven’t I Written Anything Recently

February 27, 2017


I know it has been quite some time since I have been able to post anything on my blog. Some people will already know the reason while many others are about to find out why. But allow me to start at the beginning.

13 years ago I started to fall apart in intense pain. After many bouts to the hospital and being placed on a morphine drip and a few misdiagnoses and a year later I was finally diagnosed with Fibromyalgia and within six months my Rheumatologist added the diagnoses of Rheumatoid Arthritis. The pain was pretty intense but by God’s grace I was able to endure and do my best to help raise my daughter to the best of my ability in the limitations that I had. I was always cheerful whenever I was out and about and sometimes my wife privately would see my grumpy side due to the pain. But being cheerful all the time led some friends to question me and then they no longer remained friends with me. There always seems to be a balancing act between whether one is complaining to much or not complaining enough and finding that balance is not always easy as the old saying would go, “You are darn if you do, darn if you don’t”.

Within the next several years severe coughing fits would develop and I would have to try to sleep on 5 pillows high to alleviate some of the coughing. But as it was I was not getting much sleep due to the pain levels and the coughing. Doctors would always feel my lymph nodes in my neck and comment that they were swollen but would never do anything about it or do more test. A time came when my parotid gland would seriously swell and I was always getting straph throat and major ear infections. So it was time to see an ENT. Well it turned out that my parotid gland had a MRSA virus that no antibiotics would get rid of.  They finally put me on 30 days of Levaquin and radiation therapy to kill the infection. The ENT also found out that my coughing fits was due to yet another autoimmune disorder, Sjogrins which directly affected the parotid glands.

After several more bouts of MRSA in various locations in my body (due to a very weakened immune system) that was extremely hard to get rid of and had to have some pretty extreme methods to finally get rid of them and a few TIAS due to both medications I was on as well as Peripheral artery disease throughout my legs it was finally time to see another Rheumatologist as I was progressively getting worse and there was nothing my other doctors could do anything about.  The new Rheumatologist found some other autoimmune conditions to add to the growing list. She discovered that I also had Ankylosing Spondylitis in my spine which is a severe degenerative spine disease that has the ability to make my spine to fuse together and not allow me any mobility. It is also called Bamboo spine for good reason. Because the spine becomes brittle as well as pockets of holes throughout the spine which x-rays revealed that I have numerous holes throughout my spine. The cervical part of my spine is already bending forward.


Suffice to say with all these conditions I have had some pretty severe pain levels with many days of the week where I just cannot get out of bed and not a single day without pain.

Then sometime last year in July it was discovered that I also have cancer and on September 19th they performed surgery to remove the cancer. Forgive me I do not get into extreme detail here since it is in a very private area. While they were in during surgery, they took further biopsies in the surrounding regions that confirmed that the cancer did in fact spread. They will now need to go in and preform a much larger surgery to remove the cancer.  The cancer has caused additional pain and my pain levels are through the charts at present and with all the medications I am on, nothing really seems to help and that includes Morphine, Lyrica, Tizanitine and Etodolac.

My Ankylosing Spondylitis is progressively getting worse and I am barely able to walk around anymore without my cane and it is getting to the point that the cane may not be enough anyone. I am in advanced stages of Ankylosing Spondylitis.  I was placed on Humira which is yet another extremely expensive drug ($6100 amonth that the insurance pays).  They have been doing nerve block injections on my spine but it does not seem to help at all. I also went back to the ENT who is still extremely concerned about my swollen Parotid gland but also found pre-cancer in my mouth and gums.

Additionally they found a huge mass of tissue and non-cancerous tumor that is now a part of my larynx. It is inoperable otherwise I would lose complete ability to speak as they would have to remove most of my larynx.  The problem is it continues to grow which could eventually prevent me from speaking as well. So now I am in vocal therapy to strengthen my larynx to be able to keep my voice as long as possible. The speak therapist has told me my prognosis is good as long as I do what I am supposed to do.  I have to speak more nasally and not so throaty with such resonance.  I have to strengthen the muscles in the throat through vocal exercise. I cannot speak loudly or scream and I have to give up a lot of stuff from the occasional smoking from the Hookah (although once a year type of thing might be okay I am told) to any second hand smoke, to alcohol and even soda and really really limit my caffeine intake.

Getting back to the next surgery I received some pretty bad news several month ago that the doctor who was going to perform the surgery (The only one in Maryland who could do the surgery) was moving out of state to New York and my Insurance would not pay out of state or out of network surgeries.  I did seek legal aid to find a way to get them to pay for this extremely expensive surgery since there was no way I could afford to pay for it. A few weeks ago I received the devastating call that the insurance company has worked themselves out of anyway to pay for the procedure saying that I am not a good candidate for surgery due to all my other health issues and something about some medication. Basically they want to give up on me as I think that since they have already paid for so much of my health over the years and don’t think I am worth it. In otherwise I am just to die from Cancer..

I had found another surgeon within the Philadelphia region that will actually perform the surgery and at a much cheaper price then the doctor who moved to New York. But $20,000.00 is an awful lot of money to come up with.

Amazingly I found a doctor in Canada who can perform the surgery even cheaper. The surgeon is world class and one of the best doctors around for this surgery. I have heard nothing but the best of praise on his work from those who had similar surgeries from him. The price even includes the 2 weeks stay at their recovery center and a place for my family at a bed & breakfast as well as all the medication needed for the journey home and the continued recovery at home. He will be even able to fit me in within the next month or 2. $15,000 is amazingly cheap. So it looks like I am headed for Quebec for almost a whole month.

Genetic testing has revealed that unless they remove the area where the cancer is present, the cancer will keep coming back. So they really have to get all of it because of the serious nature of the genetic anomalies that are present. There are other things found within the Genetic testing as well that would take too long and too complex to explain everything.

This is going to be a very long recovery I am told. Up to 6 months perhaps even more for me with all my other health issues. I will try to write blog articles when I am able to and I will keep everyone updated on my continuing struggles as well as blessings throughout this next year as I recover.

So I am asking you my dear friends and family to pray for me and my family. This whole scenario has really humbled me and though I am depressed from it all, I know that my Redeemer liveth and I put my trust in God. I know my God can do anything including healing me and keeping the cancer permanently away after the surgery. I am not ready to roll over and die like the insurance company wants me to. I still have a fight left within me. There is so much I have left to do in this life to God’s glory and I still have much to teach my daughter as she grows up to be a godly young lady and finds a husband and start a family of her own.

To God Alone Belongs All the Glory Forever and ever.

Hear my cry, O God; attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. For thou hast been a shelter for me, and a strong tower from the enemy. I will abide in thy tabernacle for ever: I will trust in the covert of thy wings. Selah. For thou, O God, hast heard my vows: thou hast given me the heritage of those that fear thy name.  … So will I sing psalms unto thy name for ever, that I may daily perform my vows.

For Christ’s Crown and Covenant

A Child of the Covenant,