Holding Onto Hope

HOPE. More than just a word; More than just a feeling that what is wanted can be had, or that things will turn out for the best. HOPE is a state of being … a firm belief that even if you don’t know how, even if you don’t know when, God will come through and better days are ahead. This is what I’ve been holding onto these last several weeks in the midst of what has been filled with a whirlwind of emotions and lots of change.

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Just over two weeks ago, I endured the longest, most overwhelming (but informative) doctor appointment I have ever experienced in my life at UC Health in Denver. You may recall in my last blog, I was asking for prayers, for God to specifically open the door to get an earlier appointment. Well, short of a miracle, He opened the door not only to get a sooner appointment, but also with a different specialist than originally planned – but this was exactly what was needed (little did I know it at the time).

Within minutes of the specialists entering the room, I was told I had been misdiagnosed with Multiple Sclerosis. WAIT, WHAT? You mean to tell me that the past seven months of treating MS were wasted and I had been treating the wrong disease? If that was the case, then what was going on within my body? What is the cause of all these abnormal symptoms that are only continuing to get worse? The questions, doubts and thoughts began racing through my mind immediately.

Fast forward a bit, and after multiple hours of devoted time with the specialist, additional testing completed and more lab work, I walked away from my appointment with three new diagnoses: Dysautonomia: a dysfunction of the autonomic nervous system, which controls the “automatic” functions of the body that we do not consciously think about such as HR, blood pressure, digestion, etc – all of which I’ve had severe issues with. Antiphospholipid Syndrome: an autoimmune blood clotting disorder, also known as “sticky blood” and can cause clotting of the arteries, veins, neurological manifestations (like headaches, balance issues, MS like symptoms and neuropathy). Postural Orthostatic Tachycardia Syndrome (POTS): Issue causing lightheadedness, chest pains, fainting, tachycardia, shortness of breath, GI issues, and exercise intolerance.

So, now what?

I started on some new medications the last couple weeks, but unfortunately reacted negatively which caused adverse effects, so while we’ve been trying to treat one thing, additional issues arose, and caused additional problems. I unfortunately have been walking what seems like a backwards path, as one step forwards leads to three steps backwards with how much my symptoms have been increasing over the past couple weeks. We just got test results back from a skin biopsy, so as of this past week, the doctor in Denver has started the process with insurance to get approval to begin IVIG treatments. This seems to be my only HOPE at this point to regain my life back, assuming these treatments work for me. However, gaining insurance approval for this very expensive treatment option is a lengthy process and my doctor may have to fight hard on my behalf. Will you join me in praying for another miracle and quick insurance approval?

As if I don’t already have enough to process, I’ve also made the decision recently to permanently move out of my residence and in with a loving Colorado family so that I can be looked after and cared for in the midst of my declining health to walk this journey with me. While I’ve already been  living with this family the past two months, it’s seems a little more real now that all my belongings are in my surroundings as well, and I officially turned in my condo key just the other day.  This has been a huge decision for me because if you know me well enough you know how independent of a person I am, but I’ve had to admit, that I simply can’t do it on my own.

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You see, many times in this world or in the midst of our circumstances we may be told that “HOPE is dead” and “God is Gone” for “There’s nothing we can really do.” On those days … on the hardest of days in the midst of our circumstances, we have to remember to stay committed to HOPE no matter what happens.

Even when we can't see it.
Even when we can't feel it.

Committing to HOPE doesn’t mean believing that one day we’ll get what we want. Committing to true HOPE is believing in the unchanging truths. The truths that say: GOD remains FAITHFUL.  GOD has a PLAN. GOD holds my FUTURE. This JOURNEY is not an ACCIDENT. I’m LOVED by GOD.

In the midst of the continuing emotions and the whirlwind of a journey that it's been for me, I'm choosing to hold onto the HOPE that I have in Christ alone.

"Let us hold tightly without  wavering to the hope we affirm, for God can be trusted to keep his promise." -Hebrews 10:23

"Rejoice in our confident hope. Be patient in trouble, and keep on praying."
-Romans 12:12