So, I am partway way through my 3rd week of 4 of Metabolic Weight Loss nutrition and exercise program. Have I lost any weight? No, I had lost 1 lb, but then I switched from Lithium to Depakote, whose side effect turns out to be salt and water retention! No kidding! I jumped out of the frying pan (lithium) just so that I could jump into the fire ( depakote). Stopping the lithium was supposed to stop the ‘voltage dependent drug-induced R(enal) T(ubular) A(cidosis)’ that was characterized by my body thinking lithium was Salt, and wasting the real Salt instead, leaving way too much Potassium in the body that can’t bind with lithium like it is supposed to do with real salt. So, my nephrologist was in agreement with me that since the lithium was so effective in stabilizing me, then we should stay on it as long as possible. However, my psychiatrist felt that it was imprudent to do that, and really pushed and pushed for me to change off the lithium to anything else. So, after like 6 months, I finally gave in to her and agreed to switch to depokate.
Well, we expected the hyperkalemia (excess potassium) to resolve, since my body would not be wasting its own real salt anymore since there would be no lithium to trick it. So, all my symptoms were supposed to recede and be ‘normal’ again. But what ended up happening is that my feet just grow bigger and fatter and more and more painful all the way up to just under my knees. I look like I’m walking on big giant stubs. Sleeping or putting them up does little to nothing to help them go down. I had to fight with my psychiatrist and my nephrologist just to get an earlier appointment to see my nephrologist sooner. Then my Case Manager at my mental health clinic insisted I acknowledge how she had made it all come together so I could see my nephro sooner, because she talked my psychiatrist into talking to my nephro about the swelling issues. Except, I saw my nephro yesterday, and he had never heard of either my case manager or my psychiatrist or my clinic and the only reason I got in to see him earlier was because he heard my messages and was concerned about what I described going on. So, my new case manager is not just trying to grub for acknowledgement and validation from me, her client, but she also lies about what she does ( and probably about what she doesn’t do, too). Neither she nor my psychiatrist had anything to do with me getting my nephro to see me sooner. It was ALL me! That means, I am really failing to be getting the help and support of my psych team and they are not doing any of the communication between providers that they are supposed to do and the follow up too. That means I am doing all the coordination and pushing and organizing all on my own. So what good is it to be determined as SMI (Seriously Mentally Ill) and then being told to go to ma particular clinic for all your cares so that everything will be coordinated and followed up on so you, as a SMI person, will not have to fight the system with each interaction or symptom or whatever. So that you, the disabled person, will supposedly be getting help to do and stay on top of all these things and not have to get stressed out and can concentrate on getting better, more stable, more ready to return to work or volunteering, etc. But they don’t. They just keep pretending and taking all the credit and leave you to fight all the battles on your own just like as if you had no SMI designation or had no Disabled designation, or were a regular working person contributing to the community with little more than small issues to be dealt with, not the large ones of Bipolar, Schizophrenia, etc. But now that I am recognized as disabled and SMI, I have no choice to what services I can receive. I am forced to go to 1 out of 1 clinic, and I am forced to work with the ‘team’ I am assigned (Psychiatrist, Nurse, Case Manager, and, on some teams, you even have to accept the primary care doc that is on your team–you can’t even go out into the community to choose your regular doc! Every doc you see must be in the clinic is where they are going with this. They even have a pharmacy you must use in the clinic as well). And now, I have no choice over any healthcare providers at all. I am lucky they have not yet put me on a team with a primary care doc, or a nephro specialist.
So, anyway, back to the original point. I finally got thru to my nephro that I needed him to see me, and he did. He is such a great and awesome doc–my best doc by far. Wish he could be my doc for everything! So, he is concerned that my body is not recovering like it should be. Now that the fake salt, lithium, is out of my system, I should hold a normal amount of salt in my system to bind with the potassium. They should both be at about the same ratio. I should not have to worry about the hyperkalemia anymore, nor should I have to worry about hypernatremia. But, I am definitely having hypernatremia issues—that is, way way too much salt leading to this huge swelling. This should not be happening, except there is a rare possibility that I am having a a rare side effect of the new med, the depakote. Once in a great while, some people get the side effect of intense swelling and salt retention. Hah! I let them talk me out of taking a med that we had gotten well controlled that worked wonders for my stability, just so I could avoid the future potential pitfalls of that med on my kidneys, and now I’m on a new med, which is not causing me heart and liver issues by retaining salt and water! And now, this is not well controlled the way the lithium and its side effects were. And the depakote is not stabilizing me as well as the lithium was either.
So, back to the original point. How am I expected to stay and maintain a healthy weight, a healthy body, and a healthy attidude and move forward in my mental health recovery when this is what I’m dealing with? I can’t lose weight cause all the mood stabilizers have that as an effect. Most of them also have really bad effects on me like the lithium leading to the kidney problem and the depakote leading to the heart problem. And if I’m forced to keep gaining weight, and I am having difficulties with all the related side effects, then how would I be able to lose weight, even with the metabolic stuff? And if I can’t stay sane and lose weight and deal with the heart and or kidney or whatever other issues would happen….then how am I supposed to stay positive enough to move forward and become a productive citizen again? Is it the illness, the side effects, the meds, or the complications…that keep me disabled? That keep me from being a useful human being again? And damn it, I am tired of suffering and tired of my life never being able to move ahead. Tired of being unable to do things. Tired, so tired. Something has got to give. No matter what I do to get better, something else is sacrificed to make it happen. So there is always something never getting better.
And I am not the mother I thought I could be, and I am barely holding on to life for my kids. No, really, I mean if my ex misses one support payment because he changes jobs, or something else, we could end up on the street. And I am certainly not capable of raising a family like that for the next 2 years. I couldn’t even take care of me in that state for a month. I live in fear of this every month. I just found out my ex is moving to California from Az, where we all currently have been. But his agency can’t find him computer programming work in Az, so they found him a spot in a place in Cali. But he’s not happy with it, it won’t meet the cost of living changes. And he’ll be looking for a new job once he’s there. When he switches jobs, a new court order must be petitioned by me, then the court takes several months from time of filing to rule on it, then the court orders the employer to hold the money and pay it to the state the custodial parent is in. Then the state processes the funds and distributes them to me. So, if he even misses one normal payment of the 2x/mo….we are evicted. We lose our car insurance and can’t drive. Our house of cards falls apart.
So, I think I have made mistake after mistake, leading to a tenuous existence from which my grip will surely slide sooner or later. I should never have quit working. I should never have stopped the lithium. I should never have gone down this path. Where to go now, to start over or push on, I don’t know.