Diverticulitis & Dread

bellyMy new year hasn’t exactly gotten off to a great start. I was indeed fighting chronic diverticulitis, just diagnosed on January 2 and having dealt with the worst of it over the holidays and these last two weeks. I’m still not confident, though I’ll be done with the antibiotics tomorrow, that I’m in the clear. It takes so long for my bowels to correct from infections that I will be questioning for weeks, no doubt. I’m still having pain and far from regular output, though it does seem slightly improved each day. The best I can hope for, I suppose.

I can’t say I understand why my GI feels it’s OK to allow me to go months with pencil sized stools. It’s obvious my bowels are swollen or partially blocked, but she feels miralax to be an adequate solution. I find this insane, for a healthy person, but particularly for the chronically ill. Any infection causes my overall health to deteriorate. On top of the bowel pain, nausea, swelling, and bloating of the diverticulitis I have to deal with flagging energy, increasing dizziness, non-stop migraines, joint pain and muscle soreness. Nearly two of those weeks were spent in bed because I couldn’t tolerate activity, sound or light. But in her eyes, a little miralax will do it. I know I need to fire her, just like the five before her, but then what do I do? I guess rely on urgent care, as I did on January 2.

As it is, our standing agreement is to only meet if something goes wrong. I called her, but the office was closed in observance of the holiday. I’m sure you won’t be surprised to learn I was relieved it was. She probably would have sent me home without a CT, unlike urgent care. The GI before her refused me a CT once as well and as a result I got peritonitis. When one of these doctors’ negligence kills me, my husband is going to hit the lottery. Pretty sad when that’s your silver lining.

So this morning I crawled out of bed on far too little sleep to make my first therapy appointment, which was scheduled too early in the day for me and cost me a great deal of sleep because I was very anxious about attending. I considered a number of times using my diverticulitis as an excuse to cancel, but I knew I could probably hack going today. I sucked it up and got ready to go. Then I checked my phone and noticed a voicemail. The therapist was out sick and they need to reschedule. Blast it all.

I seriously considered not calling back. I mean who really wants to go into an office and admit that she’s allowed her own mental health to go down the drain with her physical health despite all the years of hard work she did to overcome a lifetime of abuse, neglect and codependence? Who wants to walk in, sit down and confront a perfect stranger and admit to them the worst parts of one’s self? NO ONE ever. I don’t even know if I have it in me anymore. But I do know it’s the only way I’m going to get help for the masses of anger and resentment I still cling to.

I have made some headway on my own. Over the weeks of contemplating the things I want to talk about, the things I need to address, the possible nature and origin of the problems plaguing me I have begun to piece some of it together and have found more peace than I’ve had in a long time, but if I want that peace to last, I have to be honest with myself about that peace; it’s not built on a strong foundation with clear answers. It needs to be fact checked. It needs to be explored more deeply by someone who doesn’t have neuro-cognitive problems and I need to be held accountable by someone else. I admit, it’s all too complex for me to handle alone. So I called and rescheduled and my gift for someone else’s illness is that I get to wait another month before my first session. I hope this isn’t a habit. It’s hard not to feel a little let down by yet another care provider, before I’ve even met her.

It’s incredibly difficult to find therapists in the area, so I’m going to give it a chance. I know someone who sees her and they really like her so I’m hoping she’s going to be a good fit. I’ve been looking for years. It’s especially hard when your only insurance is medicare. It’s extremely important to me, though. I feel so broken and so alone, yet I can’t seem to help keep myself from doing things that only seem to reinforce that aloneness.

I know I am not alone in that feeling and that’s why I don’t mind sharing a bit of it here.

I know that because of the way I was raised, the conditions under which I grew up, I am not and never will be a “normal, healthy individual.” It took a lot of hard work and vigilance to come somewhere close to being healthy minded, which I felt I had prior to my illness taking over my life. Add to that the usual stress and strain of chronic illness (being ostracized by friends and family, sequestered to the home by illness and the loneliness that creates; losing your livelihood and sense of autonomy, losing your sense of purpose and place in the world) and combine it with the depression, anxiety and rage that comes with dysautonomia and a system that is often parked in panic mode and a brain that takes to obsessive thoughts and you have, well…. Me and that me is a supreme mess more often than not.

Since I’ve gotten the dysautonomia mostly under control, it’s been a lot easier to work on the other issues. Without treating the dysautonomia, there’s simply no chance. But I feel like it could still use some work and I’m interested in seeing if there’s something out there my system can actually tolerate that might help me with it. Of course, the rest is on me. It feels daunting and not particularly like something I want to do, but if I want to be in a happy marriage and have some semblance of a happy life despite the cards I’ve been dealt, it’s something I have to do. Of course the hardest things usually turn out to be the best, so long as you put your all into them and there is no other way to do therapy; not if you want results.

Oddly, a bit of motivation came my way last week. On Friday, I found a happy new years message on FB from a very unexpected source; my 11 year old niece, D. Being estranged from her father/my brother for over four years now, I didn’t expect it. The terminus of that relationship caused the greatest pain because it meant the loss of his three daughters in my life, all of which I had very close relationships with. I’ve considered trying to contact them when they got older, but I figured that was probably some years off.

The funny thing is, I’ve been thinking a lot about D and contemplating trying to contact her or her mother on FB, but feared her mother wouldn’t let me talk to her and worried a great deal about upsetting D, as she’s a very sensitive child, much like I was. Luckily, the decision-making was taken out of my hands and we had a wonderful chat. The bad part is that she lives with her mother several states away and actually seeing her in person may never be attainable unless I am willing to work something out to get time with her while she’s with her father.

Her father, actually both my siblings, dumped me like a hot rock because I was unwilling to engage in their unhealthy behaviors and they weren’t able to use me for their own purposes (babysitter, family planner, savings & loan, holiday hostess) anymore due to my illness. In part, it was those girls that made me stick around longer than I should have, because my family has always been the worst possible place for me. I wanted to provide them with a safe space and an example of a world free from violence, manipulation and codependence where women were allowed to be their own people.

I still want to be in my niece’s lives. I still love and cherish them. I still check on them even though I know there’s little hope of them becoming anything other than variations on our own depravities, just as we were our parents. But right now I know I’m not the person I need to be in order to show them there is an alternative to giving into it. I may not have had my own children, I may not have an example to set for them, but I do have my nieces and my stepson and they need to see that from me, understand the possibilities and that there is hope even for the most fucked up of us. We can be more than the sum of our experiences. I proved it once and I can prove it again, sick or not.

I only hope that if I do get the chance to spend time with her in person my EDS will tolerate the exuberance of a ten year old. That is one thing of which I truly have no control. I guess we’ll deal with that if it ever comes to fruition.

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4 thoughts on “Diverticulitis & Dread

  1. The fact that you keep trying means so very much. I’m stuck I’m bed most of the time because of my EDS, I just can’t be comfortable anywhere else, as long as my kids know I’m trying, I do my very best to make it to the important events, what more can I do? ☺

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  2. I love your attitude. All any of us can do is our best. I hate to admit how long it took me to be alright with doing right by myself and accepting that my only job has to be taking care of myself so that I can occasionally be there for someone else. I really feel like that’s the first step to finding some wellness and balance with this awful disease.

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