Mood: hug me
Now Playing: Day 711-The Final Road To Survival
Even after setting my cell phone alarm with three reminders there was no need because I didn't get much sleep. I was up every other hour. My friend-Caregiver said, "You look beat but I guess things could be worse and you not being able to get any sleep but at least you are getting a bit here and there." I agree although I am mentally and physically beat!
Its been a week since my spine decided to shift and POOF! things forever changed. This also means things have forever changed with what my life used to be like including normal daily activities. Forget that new bike to ride this spring and fall. Forget wearing all the cute spring and summer sandals with any sort of heel. Forget having a 'me' day playing my own manicurist. Forget putting on my own shoes without finding a creative way to put them on myself. Now taking a shower and shaving my legs is a huge feat! I was told by my Neurosurgeon/Neurologist that the damage to my spine is done. They can not help nor fix the problem. The numbness that started at the top of my left leg has extended to my knee. There are times I am finding myself having to pick my leg up from the nerves dying but guess what? Deal with it! I only say this because things are not going to change and either I cry and act like a big baby or suck it up and act like a big girl! I chose the latter of the two. Hahahahaha! My friend-Caregiver is even getting a bit creative in order to help me sleep on the couchbed and recliner. Since the spinal damage is now predominately worse on the left side I must hang my hip and left leg over the couch or chair in order to ease the sharp nerve pain. This involves using a step stool with two chairs for elevating my hip/leg or using a chair and tube socks tied to create a sling to rest my leg. Maybe we are onto our own self home medical equipment store! Hahahaha!
I am still playing catch up today from not being able to contact my specialists yesterday regarding new findings during the hospital emergency room visits over the past week. With 5 possible specialists to handle the new connected GP problems they are also trying to figure out who is best suited to take things over right now then who to pass me back onto. Its like playing musical medical chairs GP-STYLE! Since my intestines don't work without weekly treatments its still important to force flush them out so I don't perforate a hole in my intestines. Doctor #1 advised me today that I must continue treatment even if I can just do three to four glasses one day and two the next day on top of a handful of over the counter medications to keep me out of trouble. Since my Idiopathic Gastroparesis is clearly to blame for my new problems as it continues to progress there is nothing more they can do for my kidneys that are not working properly. I had a hunch when drinking decaf coffee at 2pm and not passing it until 2am something wasn't quite right. Guess what? It isn't and my gut once again was correct.
My Oncologist/Hematologist has the job of taking over my troubled lymph nodes-two different sets that are working against me which are connected and related to those who have Lymphoma/Leukemia. My other specialists will not touch this new problem area and rightfully so until my Oncologist/Hematologist passes my care back to them. Not that I don't blame them. Its called, "Liability." Most feel over 14 specialists is a lot or too many but after many years it is proof that Gastroparesis invades various organs as it continues its path of destruction. Each specialist has an organ that he/she manages and treats when symptoms arise. They all work as a team and today they worked once again very quickly as they exchange notes and stay on top of things. My Psychologist will also be helping to continue keeping my attitude in check and spirits high in order to not allow this new list of problems to suck me down a never ending hole. Amen.
Me and my friend-Caregiver did discuss limits to what I 'want' to be told. I have my boundaries set in sand that will be discussed over the next month with my specialists. I always do well 'knowing' but at this point surgery is out of the question so is any form of chemo or radiation if ever needed because my immune system is already extremely damaged and compromised by years of Idiopathic Gastroparesis. Once again I was told, "No ER surgical team will operate on you because you are too high of a risk in not making it through a surgery. The hospital team wasn't comfortable. Your own surgeons are not comfortable. Your other specialists are not comfortable." They are more than ready to help me with pain management but my philosophy is if I mask the pain then how the heck will I know when to head back to the hospital? POINT TAKEN! So I have decided to suck it up and deal with the pain. So far on a scale of 1-10 it has stayed on a steady 8. Thank goodness for having a high tolerance of pain!
New problems mean new challenges. The new diet has been tough and I was never one for yogurt so my friend-Caregiver picked up some new frozen yogurt flavors today. The masks are hard to get used to and I sometimes forget to put one on before I walk outside but keeping my immune system safe is a must! Same with the darn cane that is already hurting the palm of my hand. If I could have a house that is one level with an open floor plan and the washer/dryer upstairs things would also be a million times easier. Little things you realize are important but only after life changes and you are faced with a new set of medical rules.This photo was taken a little over a week ago before things drastically changed. I will never again question the fact that life can change in a blink of an eye so if you want to do something do it now. Not tomorrow. Not next week. Not next month. Not next year. I already miss the freedom of walking pain free. I miss my good days and trips finding new things in the city to enjoy. I went from the happiest gal I can be on my good days to a frustrated gal with a lot of bad days.
One thing I do remember and always keep in mind is that your attitude can either make or break you. Today at least I found my sense of humor again and my fighting spirit. It feels great to have you back in my life!
"Its during our darkest moments that we must focus to see the light."