Treatment Update

Three months into the year and it has been a good year so far.

One of the hard things when I got really sick in January 2012 was that just weeks before I was the healthiest I had ever been.  I was eating well, sticking to my gluten free diet, doing Bikram yoga every day and really felt and looked the best I had in my whole life.  Then one hard blow to my immune system, by way of gluten, and my health went spiraling down a rabbit hole.  Once finding out the actual diagnosis, I suppose it was a matter of time before the disease would win over my body but I got pushed off a cliff I didn’t know I was on the edge of.

I am now  7 months into treatment – IV antibiotics.  I am also stock piling vitamin and herbal remedies to help the side effects of the medications and disease.  There is definite progress but it is a very slow road.  After talking with my doctors this last check up it seems I about 25 % complete, which using my basic math skills means the treatment will be about another 21 months (the doctors will not give a time frame just a “better” percentage).

It is always so hard to describe the treatment – when people ask how I am doing or how treatment is going or ask questions about what treatment is.  I have resorted to the simple comment of – its like a milder version of chemo.  Which on all accounts is true – but still feels awkward to state.  Nausea, vomiting, changed taste buds, hair loss, muscle deterioration, weakness, cold and the list goes on.  Everyone knows what chemo entails – so it makes the conversation quick and easy.

So how is treatment going – well depends on my bodies response to each and every treatment.  Sometimes I can get right up after and work, cook or go out, most times it knocks me out for the rest of the day and sometimes it knocks me out for a couple  days.  Eating is the hardest part.  I am so nauseous all of the time that I have no interest in eating.  I logically know that I need to eat to get better so I force myself to eat at least enough to survive but really no more – a spoonful of peanut butter here and a banana there.

I would not be able to do this without my support system.  I have friends bringing me food when treatment makes me too weak to cook, everyone willing to drive me when I need it, bring me meds and best of all sit through treatment with me.  Being in Texas and so far from family is hard but Nathan (boyfriend) and Ryan (best friend) make it that much easier – they coordinate who is taking car of me when needed, who is going to important dr appointments with me, update each other when the other is taking care of me – they have become my family here in Austin and I could NOT do this without them.  Without them I would have had to move home already.

The next step is figuring out these blood clots – I will be seeing a hematologist in April and will do a full body scan to see if the blood clots are gone.  If so, then I can stop the blood thinners and start testing for genetic mutations and predispositions for blood clots.  If all of that comes back clean then I MIGHT be able to convince doctors to place the port back in my chest for continued IV treatment.  Right now the peripheral IV is coming to a close as my veins are complete burned, burst and loosing the ability to take the IV – so my hope is that the port can be placed again for the remainder of the 2 years.

Outside of treatment life is great – family = amazing, true friends = amazing, boyfriend = absolutely amazing, travel = blessed.  I have a running joke with my parents that God creates travel opportunities for me to fill me up with smiles.  I was given a trip to San Francisco, Sunnyvale and Tahoe – only paying for food.  Then I was in Key West for a friends wedding and was able to see 3 of my aunts – one I had never met, one I hadn’t seen in 10 years and the other in 3 years. (I will post soon with photos about all of my recent travel). I have a good friend who has recently become a trainer for boot camps and she is helping me to start working out again – as much as possible.  I was a very active person so even just being able to move around gets my mind cleared and energized – even if it does the opposite to my body.  I want to build my body back up on all areas – immune, nutrition, energy and physical.  I am taking baby steps – but steps in all of these areas which is a huge feat compared to last year at this time.

Anyways – just a long winded update to say that I am doing better and see a light at the end of a long 2 year tunnel 🙂