Still Struggling

It seems like this last week has been harder than most. Just need to write things down to see if I can start to sort things out.

Seems health concerns are the continual story of our lives. Last weekend it was Preston with kidney stones. Poor thing was so sick, but finally passed them during the week. This week it is me and Colton again.

Colton has really struggled this week with behavior, emotions, etc because of physical concerns. School work has been almost non-existent because I have been spending all my time on discipline. Meltdowns are where they havent been for a really long time, and we have been at that level for a good 3 weeks now. He had one good window at his OT appt but that was all. 1 hr of complete calm from this whole week. The rest has been spent screaming, hurting others, slamming doors, throwing things, etc. All which have landed him in his room most of the time and early bedtimes. All of the help he could be getting is on hold because we are still waiting to even see specialists, or waiting on others to put things in place to try to have insurance help cover appts that have exorbant price tags attached.
I feel like for the most part we are hunkering down again - not going places or doing things because he is not holding it together here at home, let alone anywhere else. I also feel that no one else understands where we are at and I have had many comments made that just make me feel like I am failing him.

My health has taken a sudden downturn in the last few weeks as well. This week I have been esp struggling. Sleep has been next to non-existent, and when I am sleeping I am having nightmares. We have exhausted just about all the resources available with my sleep specialist because what works for most people has not worked for me at all. Meds are really not a choice either, just not willing to put myself or kids at such a high risk to play with things. So I continue to struggle on my own.
This week I also got another big whammy. I went to give blood this week, only to find out that the Red Cross has added a new restriction - Chronic Fatigue Syndrome. I talked with the nurse on staff at the blood drive and the more she looked at me, and the more ??? she asked, she strongly recommended that I not give even though I havent been officially diagnosed in the past. I barely held it together as I walked out of the building. I had been feeling like this was one area I could really do some good for someone else, and now I have been turned away, again, and may not ever be able to give again...

Before I left the building that day I made a phone call to my dr office. I was told he was scheduled 3 months out and that he was no longer considered a primary care, only a specialist now. Great. I was suddenly in need of extra medical help, and had no doctor again. I was told that a family nurse practitioner was on staff now and that she could be my primary care and that she had an opening the next day. I took it, hoping for the best.

I was able to see her yesterday, but still feeling very unsettled about the whole appt. We spent 1 1/2 hours going over my entire history - again. She also kept asking snippets of questions about my spiritual health and any past traumas. I told there were concerns without going into any details. She asked about my support system - about family or "my church" I told her that we didnt have family here to help and that I did have a good support system from church, but not for everyday little things or even current struggles. Everyone else has a life of their own, I am not going to call others just because I am having an extra bad day, or extra bad few weeks. I should be able to handle those things on my own. Plus I am already feeling very alone around everyone I know right now, not fitting into any circles, feeling like most people are perfectly happy to steer clear of me and that is my own fault. (I didnt share this with her)

Just at the end of the appt the NP said she felt that she should tell me that she is a christian and that dealing with spiritual health is part of the whole. She responded to several comments that I made about feeling the same way, but I also left feeling almost condemned for the things I said because she felt like I wasnt christian too. It may have just been my brain being way too overwhelmed and already feeling unsettled, but I am having a hard time deciding if I am going to go back, and knowing right now I dont have any other choice. I want to give her the benefit of the doubt, but it is hard trying to decide if I do, what other appts are going to be like. The other dr I had was the first one in a very long time who I felt actually listened to me without judging me. Now he is no longer available, and I am left feeling stranded again and yet still having unresolved medical concerns.

The concerns may become even more challenging from the conversation we had. She was pretty sure that there would be a clinical diagnosis for CFS, even without other testing (which they dont have) but she was also concerned that because of other things I shared with her that I may be in the beginning stages of Fibromyalsia - which usually goes hand-in-hand with CFS.
Neither of these have blood tests or exact tests that say "ah ha, this is it!" but there is pretty detailed information about symptoms and markers (which sounds like I may have several already) I have known people with FM and know that this is nothing to take lightly.

At this point, I am in holding pattern again. My records were not available online and found out that they have been archived, which will be a pain in the tush to be able to get a hold of. The NP said she was going to work on getting all of my detailed records, including a list of meds and supplements I have had in the last couple of years, and talk with my previous dr in that office to see if she could get a better, whole, picture of what the next steps will be. Most likely there will be some follow up blood work (most likely vit D levels are severely depleted again and hormones are totally imbalanced) as well as some new blood work and some more "tests" to go over symptoms and markers of CFS and FM. She was hoping those would happen this next week. So I am just in holding pattern again until I hear from her and we know how to go forward.

One of the comments about "spiritual" health made me comment that sometimes Heavenly Father helps you through something vs cutting you loose from it (she had her own comment to that) and I keep wondering what it is that I have not learned yet - what it is that I am still failing at - that these health concerns continue to be such a big part of our lives - for me and for Colton and for our family. For now all I can do is wait things out, and try and figure out what we are going to do, and what we can do to get through this again. Not sure what all the options are yet, will have to work extra hard to be patient enough to be in holding pattern until we know more.

Lots more to write about, but will have to wait for another time...kiddos are all up and my quiet window to write is gone for now...will try to write more soon, maybe