Getting tired of fighting

Hi all,

Just returned home from LLND. I really don't know how to take all the info he gave me. He gave me the results of some blood test that were run. I have a elevated High Sensitivity CRP normal range is 1 - 3mg/L, mine is 12.9mg/L. I also have the MTHFR c665C>T heterozygous mutation.

I had a GI appointment on Monday and they have scheduled me for endoscopy and colonoscopy for the 30th. I have been having continuous GI issues, and when I had a CT scan back in August, they saw something in my colon. I also have a hematologist appointment next Wed. (Are we having fun yet?)

LLND has me stopping all prescription meds till after all the procedures and tests are done. He wants me to start shots or IV when I continue the meds again. I am staying on the naturals for the time being. The past 3 weeks most of my symptoms have returned. The LLND's demeanor seemed defeated when I met with him today. Not very encouraging!

Could anyone give me some input on shots vs IV please?
Do you need shots of antibiotics everyday?

Feeling a little down today. Too much stuff, I'm in overload.

Hi Mom of 2 -
I just got back home and am exhausted, but I didn't want this post to wait until tomorrow since I saw your post just before I had to leave the house.

First of all, I'm so very sorry! We often look to our doctors for hope and when they seem to feel defeated, it can really affect us. Try to relax and not even think of all of this tonight if you can. It'll all be here in the morning, yet you have given yourself a break.

Remember that this is a long journey - no quick sprints to the finish line for many of us. I've been in treatment for one thing or another since 2010 - although I had a year of treatment in 2007 as well.

So take small bite-size pieces of the issues to deal with. Just concentrate on one step at a time. And take something to take notes to each appt - it could prove to be helpful. I keep one of those small notebooks in my purse in case I need to take notes and I'm not prepared to.

First up seems to be the GI appt. on Monday. Make sure you have all of your arrangements in order, since that is coming up right away. Don't worry about the rest of those things - just this one.

Then comes the Hematologist - this should be an easy enough appt. They are just checking your kidneys, so maybe a blood draw?

Next is the Endoscopy and colonoscopy - just concentrate on those - get all that you may need to prepare for that together and get through that testing. Don't even think about the GI appt at this point, or the gene mutations - they will all still be there once you get through this.

Then when you go back to your doc armed with all of this new information, you can get a new plan of attack. Then you will have a bunch more information, but you will be well informed then!

Gene mutations can be dealt with, just as these infections can be - but we can only take one step at a time any way - so why fret and worry over stuff we not only have no control over, but can't do anything about until we get to that day anyway?

Hang in there, and come here to vent when you need to or to get some confidence built back up.

That's a good point Garden.

I'm tired of fighting too.


Margaret

Hang in there and keep pushing on, prayers and more prayers!

I just wanted to say hang in there mom of 2. We are all here to support you! Sometimes the amazing people on this site is what keeps me fighting. You have a hard road to travel, but remember we are all here to get down that road together. I would feel so much more alone if it wasn't for the great community we have here. Thank you to all of you that try so hard to support one another. It is inspiring.

Thank you so much for the support and kind words! It really helps when you're feeling down. I will get through this and so will everyone else:) I love this forum and all the truly wonderful people on it!!

Traveler, I'm sorry to hear about your dental issues. My mom had a similar issue and also had to have bone graphs. She had an infection that ate away part of her jaw bone. I wish you the very best!! Make sure you keep us updated as to how you are.

My children are 12 and 13 now. So no more little ones running around. Now I'm more of a taxi service. At this age comes the physical work like hiking mountains, biking, skiing, etc. They are still a lot fun though!! Kids can be so amazing!

Hematologist appointment is done but not over:( Blood work came back elevated again and with large platelets. I tried to convince her that it was from all the meds I'm on. She had blood work dating back to 2011 and it's always been high, oops. Well that theory was thrown out the window. She did agree to wait and do the blood work again after stopping all meds. If it comes back high again she wants to preform a bone marrow aspiration and or biopsy. Here's to hoping my blood levels come down and my platelets get smaller.