Sarcoidosis

It's been five months since I've had to juggle appointments and deal with doctors. But those were for others. I hate to admit it but I have not been a good patient. Being Mom allowed be to focus on something other than my chronic illness and I believe motherhood played a big role in my illness becoming stable.

But last week I had a scare that sent me to get checked out. And while what sent me there turned out to be ok, my blood work came back and seems to indicate a "flare up" of my Sarcoidosis. Here's a tip: if one test is abnormal that usually means there are more tests in your near future.

I didn't do much about my disease while the kids were here. I didn't have time and my symptoms were not bothering me. Well, things bothered me but they were not Sarcoidosis related. And there isn't much I can do about it aside from take pills. Doctor have always said stress is bad for my disease but foster kids or not, life is stressful! Is it a coincidence that the kids left and I'm on the brink of illness? Probably not.

The days after the Fab Four moved out were dark. And painful and ugly. And it's been a few years since my blood work showed so out of whack (which is about right for my illness). In short, I was probably due.

So I went about the process of finding my doctors who have moved health systems and have left the area. And as expected, I will have to wait 3/4 weeks to see those specialists. 

I feel fine. Rundown but I don't feel sick and I'm not in anymore pain than usual. Sarcoidosis can affect any organ but is commonly found in the lungs, eyes, skin, and heart. It can also be found one the central nervous system or brain. I have had it in my lungs and my brain. Common treatment for Sarcoid is steroids and other immunosuppressants. I have tried nearly every medication that is used to treat recurring Sarcoidosis. In the past, there have been instances where we have chosen not to treat and let the disease resolve on its own. And by resolve I mean go into remission as there is no cure for Sarcoidosis. (Why would I chose not to treat it? I react badly to steroids and there are risks associated with prolonged use of them. IMO the side effects of the steroids have always been worse than my disease itself. 

Maybe ill get lucky and someone will call me with kids available for adoption tomorrow (and won't decide to give them to another family) and motherhood will kick my disease into remission! :) 

This is what other Mom's Blog about?

Since stumbling into Foster Care Land three years ago, I've been plugged into the Blog-o-sphere. I had dabbled in Blogs at the suggestion of a friend while going through an illness. I didn't find many blogs devoted to my condition and I manage an update on that blog maybe once a year. (Sadly...)

When I began this journey into researching adoption and adoption through foster care, I pretty much stopped reading blogs that didn't pertain to some facet of the adoption triangle. 

The other day a friend of mine posted a link on Facebook to Mommy Blog. Ya know, a blog written by a Mom. That's it. Not Trauma Mom or Adoptive Mom or Foster Mom or First Mom. Just a Mom. With good advice about focusing on the important things.

 

And as I read I thought, huh? What would life be like just being a Mom, no additional title. Would I have a blog? Would I have enough interesting things to say as a Mom without a Pre-Fix? I concluded- probably not!

I've not written very much about fertility on this blog. I've struggled with if I want to share this piece of my puzzle with the world. Right now it seems important to share it as I've met many people who come to be foster parents and adoptive parents due to fertility issues. And its one of the more complicated pieces for me and I imagine a lot of others out there.

I've never explored my fertility. No doctor had ever told me I can't have children. We had held off because we wanted to have a solid marriage to add children to and then I got sick and the medication I was on was very dangerous and we were counseled on preventing a pregnancy while I was on it.
The ironic part is that a pregnancy may send my illness into remission. (Right now it is stable meaning not getting worse but also not gone.) It could also cause a flare up. Somewhat of a scary proposition for me.

So after a year of irregular cycles, possible chemical pregnancies (a very early miscarriage), and no actual pregnancy I decided to explore what is going on. I really feel like I just want to answer the question rather than always wonder if I could have had a pregnancy if I decided that it was really important to me.

Thus far, I'm not sure how I feel about having a pregnancy. I just want to be a Mom. I have a really hard time believing that it would make a difference in the way I would love a child if I birthed a child verses adopted one. I don't say that to mean there aren't differences in biological and adopted children or their experiences. Just that I believe my heart and my ability to be a parent would be no different.

Several people in my life have asked me if I would go the fertility treatment route. Well meaning friends and family seeing the sadness and stress of us being foster  parents suggest this as if that would be less stressful or sad. I feel like its trading one kind of stress for another. And what if it doesn't work? At least when I'm not really worrying about it, I have some sense of control (ok it a false sense, but its a sense). That's not to say that I'm opposed to it or judge others. Each person's decisions about what kind of family and how they want to create it is just that, their decision. I'm just not sure I want to decide anything. Or sign up for medication.

Its hard to explain the experience of being chronically ill if you have not been through it. Its a type of trauma. It was not severe trauma but definitely stressful and left residual triggers and emotions. I was seeing seven specialists at one point. I had a medicine cabinet full of pill bottles each with their own side effects. I had to feel worse to get better. And while I am grateful that I had physicians who were willing to work together to get me to a place where I could function again, I dread being back in a specialist office. I don't know if I will be able to get over that. Luckily Hubby is supportive and has allowed me the space to come to terms with all that is swirling around in my head.

The doctor feels there is something going on and that its not attributed to stress like I thought. At the same time though she didn't seem super concerned about a serious problem so I'll take my cue from her. I go this week for some further testing.

I don't often let them see me sick.

I have an incurable illness. I've written about it before. My kids know that I have issues with headaches. They have no idea how sick I've been. They know I may never have biological kids because of it and that is why we became foster parents. But I don't flaunt it in front of them. In fact I handle all doctor appointments an testing without them knowing. Except today. Today is the first time they have ever been to the hospital with me.

The dizziness and the anti anxiety meds I took to curb my colossal freak out when being put in the MRI machine meant Hubby had to dive me. And since the kids had the day off they had to come with.

I assumed that Hubby would have them watch movies in the car. But 5 minutes in the waiting room and the crew comes running up to me. Now they are waiting in one room while I wait in another.

I feel bad. I hate people fussing over me. I hate ending an inconvenience. I hate that this may cause the kids to worry about me. I hate that with these results I may get news that my disease has worsened. Or that someone is going to tell me to stay off the rides at Disney World. Or be off work.

You have a Unique Life Situation

Questions are a part of Foster Care. I encourage questions as I think more awareness is needed about child abuse and how the system works - and how little sense it makes sometimes. New foster parents always wonder how to handle the questions and responses we get over and over. For example:
How do you do it?
Aren't you going to miss them when they go home?
Do they miss their Mom? Even though they have you?

We also get comments:
You're a saint.
I could never do that. I'd get too attached.
The kids are so lucky to have you.

I think you have to find what works best for you in order to deal with these types of responses to people finding out you are a foster parent. For myself, I have some standard answers:

We make it work. It's not without stress but it is totally worth the reward.
Of course I'll miss them. But we hope to be in their lives. And these kids gave me a chance to be a Mom and I might not get that again.
Yep they miss her very much. She's their MOM. She's all they know.

Usually to the saint or angel comment I fake humility. Other days I ignore it. And then the rest of the time I say- You give me too much credit.And to the I would get too attached I say - The kids need someone to attach to! They need to heal. I also have a very standard answer to the kids being lucky. WE ARE the lucky ones.

So now that I have standard answers to standard questions and comments I was a little thrown off this weekend by a co-worker and my new doctor.  My co-worker and I were not familiar with one another and she asked the basic getting to know you question of someone who is married: Do you have any kids?

ME: Yep. I have four foster children.  (Now in fairness it was loud in the bar we were in.)
HER: Are you serious? I'm talking about actual kids. Four? These aren't your dogs or anything are they?
ME: No I am serious. They are real live children and there are four of them.

My new doctor had seen my husband for the first time a few weeks ago and as I was describing my family he remembered him.  He didn't try to hide his opinion that this was a lot to take on for anyone and he was very candid about the fact that he was concerned this amount of stress could make my illness more pronounced.  Actually his words were "Stress isn't good for Sarcoid."

So when I told him I was concerned about my anxiety level and feeling a little blue he agreed that I probably needed some pharmaceutical help. And then nodded even more earnestly when I told him I worked full time.  "You have a full day."  During the deepest part of my illness and depression I was on an anti-depressant and it worked rather well.  He also gave me the names of two psychiatrists he likes and encouraged me to go back to therapy.  His parting comment about all this was that "You have a unique life situation that automatically sets you up for stress and depression.  We need to help you not take on too much."

Its a little too late for that.  I have to work full time to get all of our bills paid.  I have no ability to suddenly cure my incurable illness and while I might have the option to not have four foster children in my eyes that's not really an option either.  I''ll take the happy pills and learn more emotional coping skills and be on my way - thank you very much.

I "tried" to call....

I've mentioned in a few different posts that I have an incurable illness called neurosarcoidosis. My particular case has been hard to get into remission and at this point I'm just waiting out the pain and symptoms. (Kinda like I'm waiting out the kids case to see if I will be THE Mom.) A few years back the docs (yes plural at one point I was seeing 7 specialists) had me on a high dose of prednisone which is a steroid and it made me crazy. Seriously, I was a basket case. I was exhibiting bipolar level highs and lows and was awake for days. I was irritable and the slightest thing would make me rage and the next day would make me cry. It was fun stuff. I managed to alphabetize all of my scrapbooking embellishments and label all my supplies while also finishing the Twilight Series in one week.

The docs kept telling me it was normal on the dosage I was on to suffer from "depressive symptoms and crying spells" while on prednisone. Except I was basketcase crazy. Finally, my head specialist told me that I needed to find a therapist and a psychiatrist as I was likely to be on and off these types of drugs the rest of my life and I needed to be prepared to keep living my life and not hide in my basement reading about vampires.

And that's how I met my therapist, Molly. She was funky and positive and validated my feelings. She put up with me as I walked into her office 1-2 times a week and cried for 45 minutes straight. She helped me understand my panic attacks and the relationships in my life that needed help. She helped me find my voice. And then about 18 months later I walked into her office and didn't cry. And then did it again 2 weeks later and we decided I was probably okay. I saw her shortly after my grandma passed and the kids came and discovered that her kids go to the same school. And then life got busy and I got focused on healing my kids and I haven't gone back.

But lately.... My fuse is short and I'm irritable. And I feel anxious and frustrated. And I'm worried I'm going to slink back into the deep, ugly, dark pit of depression. And I realize I need to take care of myself. And I've debated about going back to Molly. She won volunteer of the year at the school and the types on Moms that win volunteer of the year and how intimidated and judged I feel are one of the issues I need to work through. And really how do you say that to your therapist?

Hi! Thanks for helping me but now you make me feel bad about the kind of mother I am and while I trust that you will keep everything confidential I'm not sure I want to share everything now.

But I also don't want to start over. I don't want to have to discuss the family issues I have with someone else. I did that for a year already. I want someone who understands how far I've come in regard to being ill and having to reduce my load to a Mom of 4 who works full time. I want her to cheer me on since I left the job I hated.

And since yesterday I cried when the girls' therapists asked me a few harmless questions I decide to call Molly and make an appointment. But the phone system changed and her extension is no longer hers and I would have had to hang up and dial the other office and I was in the car. So I let it be today. It's a step in the right direction and I know it's one I need to take.

A New Journey

I find blogging theraputic and as such have decided to start putting down some of my feelings about a new journey I am taking: Motherhood. The last 18 months have been something of a rollercoaster. Definate highs and ultimate lows and the same feeling when the ride stops - Let's go again. And so here I am about to embark on a new journey into previously unknown territory foster care/adoption. Ultimately, I feel empowered and prepared and this is how I know this is the right thing for our family.

For those of you who don't know anything about me currently I have an active bout of Neurosarcoidosis. This is an autoimmune disorder that can effect any tissue structure in the body and currently the disease is residing in my brain. If my head were a map the House of Pain is located on Trigeminal Nerve Ave. Left side. Next to The Temple. For reasons unknown my body has decided it doesn't like normal courses of treatment and as such has failed to respond to them. I'm a bit of an unusual case and fully expect to end up as a case study in a medical journal one day. For nearly 18 months I was in chronic, constant pain. And until I tried acupuncture I thought I would stay there. But after nearly two months of acupuncture treatment 2-3 times a week I am almost back to living my life normally and relatively pain free. (Realtivity is an interesting world to live in.) I have found a new normal and a new set of circumstances and information that I live by. I've learned an entirely new language of medical terminology and procedures and have recieved a crash course in hollistic care.

Why is this important? Well 1) because all this has defined a new me 2) because it led myself and my husband to consider a new path to having a family. One of the challenges I was giving to my doctors was treating me with medication that would be relatively safe to give to a pregnant woman or one who wanted to become pregnant soon. If I take that restriction away it buys me some time so to speak to try new therapies that might send the disease into remission. But what about starting our family.

Hmmm