Monday, August 10, 2009

Mandi Monday should be renamed Mandi's Meltdowns

So in the act of full disclosure, I'll tell you that I actually wrote this last Tuesday. But I did it with your best interest at heart. I had a bit of a meltdown, unexpectedly (and to Ronnie's misfortune) last Tuesday, and figured I'd write about it right away to capture the raw emotion better...for your reading pleasure.

I had a bit of a meltdown today. Why, you ask? I have no clue. Ronnie and I were sitting having our breakfast and BOOM, meltdown about health insurance. How did it come up and where did my emotions and fear come from? I have no idea. Ronnie and I both can't remember the first words out of my mouth, maybe I blacked out as I hyperventilated through my sobs? Within a short span of time I said we'd never get married if we didn't start working on insurance now, tried to find career options for both Ronnie and myself, said I felt like it was all my responsibility, wished I had a job that gave him benefits, and the list of grievances goes on. Where did that get us? No where - as Ronnie continuously pointed out during the conversation as he lovingly tried to say, "why are you worrying about this right at this moment. Nothing will change at this second by you worrying and getting worked up" to which I would tearfully respond, "one of us has to worry about it or nothing will ever change" (not so logical).

Let me give you a slight background. I have medical benefits with my job, but I'm at a SUPER tiny company, so there's no way my plan can support him on it. Ronnie works for the same non-profit part time, but if he gets benefits through it, the company's premiums go up 10 fold. He's currently still under his mom's insurance, so if we get married, he is no longer considered a "dependent" on his mom, so no insurance. Which leads me to the kicker, we can only tie the knot once I have a job that has good enough benefits for him. It has been discussed that Ronnie work (part of my melt down was that it all depended on me, and I wanted him to try also). We'll explore that option, but it's obviously a little riskier because he needs to make sure he can keep up on his treatments, working out and hospitalizations while working.

So here leads to the bigger issue that I was upset about (I think...it's tough to quite tell). I feel a little embarrassed to actually express this, but I think it may help both CFers and CF significant others, so here it goes. I felt, in that moment, like I was having to sacrifice a lot. I felt like I had to leave a job I love to get him benefits. I felt like I had to work forever to keep those benefits, while I had always dreamed of being a stay-at-home mom (like my mom was). I then thought, "well we may not even be able to have kids" (something I've always wanted). I felt like we couldn't get married when we wanted (we've been ready for awhile now). I felt like we didn't have all the time in the world (I clearly never pictured marrying someone I knew could potentially just not wake up tomorrow). I felt like I was having to give up a lot of what I've always wanted to be with Ronnie because he had CF as all those unenvisioned circumstances piled up in my mind, I got more and more worked up.

But here is what I often think about, when I return to a rational state. There are two main things:

1. I may be giving a lot when it comes to Ronnie's CF life, but I am not giving up anything when it comes to Ronnie. Ronnie is just what I need. I cannot begin to tell you what he does for me. All we talk about on here, is what I do for Ronnie and his CF because that's what this blog is about, but that's only a small portion of our relationship and certainly only 1 side of it. Ronnie is my rock. He provides guidance, confidence, understanding, excitement, support, encouragement, comfort, joy, and countless other things in my life. At the end of a tough day, one conversation with him is all I need to put the day back into perspective and make me forget the stress of anything that may have come my/our way. His sense of humor has a way of cracking me up until I've got tears running down my face and I snort (yes, snort). Also, I'm very much a rollercoaster of excitement, anxiousness, sadness, happiness, goofiness, intensity, animation, etc etc, while Ron is a consistent, steady-eddy. That's just what I need (and certainly what my future family will need). He is very much like my dad. And I can tell you that there is no better father and husband than my dad and I'd be bless to marry a man just like him (not to mention I've learned how to interact with my dad for the last 22 years, so it comes naturally). So while Ronnie's CF presents a different set of circumstances that I maybe never pictured, Ronnie is the man I always wanted and never knew I needed. And he is very much the way he is because of his CF, so I would NEVER take that away. I'd rather have the challenges of CF then the man Ronnie would be without it.

2. I may have always pictured my life one way, but that doesn't mean God planned it that way. I pictured what I've always known. A dad/husband that worked, a mom/wife that stayed home, a few kids that came with ease - as fortunate accidents, a guaranteed long life with my spouse. That is what I envisioned as a perfect, beautiful life. But what isn't beautiful about this?: A stay at home dad/husband (that is FAR more patient, just as loving, and just as good of a role model), a mom/wife that works, a few kids that are miracles, and a blessed marriage that is full of love, happiness and memories. So sometimes I need to push aside my preconceived ideas of what I wanted my life to look like and let God show me what my life is supposed to look like.

I'm not sure if these are natural feelings that come along with a CF relationship. I would imagine that they are. I'd love to hear your thoughts if you've had similar ones, or if you never have, I'd love to hear that too. I think all to often we think it's not "appropriate" to share some of the negative thoughts or fears we have. But they are quite normal and therefore healthy to discuss. I think we're often scared to verbalize things like this with our CFers because we don't want to hurt their feelings or assume that it will be insulting, but if done tactfully, it can really strengthen a relationship. They have had their whole lives to figure out their perception of their life with CF, for most of us, we are new to figuring out ours. However, I will say, my approach, expressing all of this in a moment of fear, anxiousness and sadness, maybe isn't the best. I would guess that you can probably more tactful in your approach if conversations like this are had in rational, calm conversations, but sometimes, it's just not how it happens.

So bigger lesson of the day: Share your feelings, both good and bad, about CF with your CFer. There's nothing wrong with the way you feel about it and by talking about it, it becomes you and your CFer against CF, not you against you CFer, which could happen if you bottle it up.

14 people had something to say...:

Anonymous said...

Having CF myself, health insurance is a huge stress in my own life. Often, I feel that I am trapped at my otherwise dead-end job b/c it is flexible and has group health insurance, the two of which are hard to get as a package deal. I understand completely the stress you have and many days wish my significant partner could provide all the bills and health insurance so I could stay home.

Denise said...

That was a really nice post. So real. I think of that when I read about you two so it's nice to see how you put it in perspective. You're relationship must be so strong. I'm happy for you both.

Anonymous said...

#1) kinda like the above reader I have had family members tell me that b/c of CF i will need to sacrifice what i enjoy doing in life in order to ensure good insurance...

#2) ill be 22 in sept and in my last year of school (im a 5 year-er engineering undergrad) and barely have the energy to be enrolled full time to remain under my parents insurance. I tried to intern over the summer w/ ivs and modified work schedule but still ended up calling in sick quite a few times. This is all leading to once i turn 25 or am out of school I will need a new form of insurance whether it be "medicade/medicare" or my current boyfriend of 5 years turn to husband's insurance because right now I know there is no way I will be able to work enough to qualify for insurance.


#3) Said boyfriend of 5 years and I are not married b/c of my cf and need for insurance. Granted we are both in school still, but I think at times he feels the same mandi does b/c he likes many things that dont always bring home a lot of money and/or have insurance. It is something we struggle and deal with pretty often especially as the want to be married increases constantly.

Good luck. hopefully someone has some good advice.

Kellee said...

Its so awesome reading your feelings!
What you had last week was EXACTLY where i was last year on a weekly basis.
Im not gonna share to much through the comment box (it would be a book) but if you would like I can give you lots and lots of insight on the whole marriage thing..There are ways to do it, it just took me a year to work out all the kinks..
Anyway shoot me an e mail if u want me to go into detail and Id be happy to share our story!!!

Deb said...

hey mandi! i think you are one brave woman to put it all out there... i doubt anybody who is in a relationship with a chronically ill person, much less cf, can claim to not have negative thoughts. better to keep the lines of communication open and be honest with each other from the beginning than to act like everything is fine, while resentment builds.

the one lesson i learned FAST after my son was diagnosed with cf is that any plans or hopes or dreams i might have had for my child or my life were irrelevant. i was handed a completely different set of circumstances and had to let go of a lot. but what i gained was such a great perspective on life.

so i know you really just wanted to vent, but if you want a little practical advice... why not look for a job with the government? good hours, good benefits, lots of holidays, and good job security. i know you are happy where you are, and it will all work itself out, one way or another. you love each other and that love will take you far.

Amanda said...

Great post, Mandi. Even CFers fret over those things. Two thoughts that might send you looking in a different direction and might helpful:

1. Universities always have great benefits (and cover spouses/families) and have more holidays than most jobs. This was my scheme (as a CFer) when looking for a job.

2. Starbucks used to offer benefits for working 20 hrs a week. Not sure if this has changed with the economy.

3. I had a CF friend who for years was her mom's "domestic living partner" for insurance purposes after she reached the age no longer insurable as a dependent.

Just a few ideas. May or may not be right for you and Ronnie, but worth considering. But don't worry--you're not alone in worrying about this.

Amanda

Mandi said...

Thank you all for your comments and advice. I LOVE advice! If you come across any good insurance resources please pass them my way.

niki36 said...

Mandi, I love your honesty and candidness. You have a wonderful way of putting your feelings into words that so many can relate to.

As the CFer in the relationship, I am on the other side of things. Luckily I married into the Army at 22..so I don't have to worry about insurance(altho it did bring up a whole new list of things to worry about).

I often feel responsible for things out of my control. I worry that Rob will regret marrying me; that I might not be able to have children; that if we do, I might leave him to raise them on his own. It is a lot to deal with, but I think talking about it helps. Rob doesn't like addressing it, which frustrates me. That makes me appreciate hearing your side even more.

You are right that God has a plan and I loved the way you put it in point #2.

Thanks as always for sharing your point of view!!

Nicole

Anonymous said...

After reading what others have said so I want to share what I have had to go through as the CFer married, divorced, and single.

I was on my parents insurance and when I got married at 18, 2 months after graduating high school I went on medicaid. I had applied for SSI prior to getting married. So the transition from parents insurance to medicaid wasn't horrible but stressful. I was on medicaid for about 2 or so years. I was on SSI which is income sensitive, which includes anyone that has income in your house. My ex-husband was in college and then quit and was working. We had to keep track of his income because if he made over the limit my SSI would stop and so would the medicaid. After getting tired of that I went to work to get insurance. I purposely looked for a place that I knew had decent insurance (through friends). I started working and a month later my insurance kicked in which gave enough time for medicaid to not know of the income. I had to quit working about 4 or 5 years later because I was getting sick to often and it was putting my body through more than it needed to. My ex-husband never got a job that had insurance or never kept a job that had it. He was self employed and therefore no insuance covereage for us. When I quit working I applied for disability, I had worked just enough to qualify for it. I paid for cobra insurance through my employer for the 18 months allowed. I got denied the first time and then appealed with a lawyer and got approved within 18 months of applying. Once I got approved I started receiving medicaid again. It all happened just at the right time. I of course got refills when they were due and didn't wait until I needed them so that I had a little cushion. I did have to move across the state lines because I made to much money to get medicaid in KS so I moved 20 min to MO. I don't make too much for MO medicaid. After being approved for disability the Medicare became active like a year later. So now I still have medicare and medicaid. I divorced 7 years after getting married and it didn't matter much because I didn't rely on him for anything because he wasn't reliable. Each state is different on what the requirements are for medicaid. I am still single. I am living with my boyfriend of 2 years. They don't take into account his income for medicaid because I am on disability. Things are fine the way they are but we do plan to get married at some point. No rush since we both have been married before...lol! He is in the Air Force so I too will not have to worry about insurance. I will still have my medicare no matter what. Sorry this is long. If you have any other questions feel free to email me anytime, I am an open book and love to help. ltlhook@yahoo.com

www.caringbridge.org/visit/65rosescf

Anonymous said...

Hi,
My spouse has had to make many sacrafices for me as well, especially when it comes to health insurance. She currently holds the health insurance and we had to get married (sooner than we would have) so that I could get on her insurance plan. Her benefits are incredible. She would love to work less hours or a different job, but she can't because she supports me on her insurance. It's been really hard on us having that responsibility on her, but it's about finding what works for you both.

lindsay michele said...

Mandi,
I think you went through what just about every CF spouse goes through. There are many times went I feel badly because I'm at a job that doesn't have insurance (but it lets me work from home with little stress - huge help to my health) which means my husband has to stay at his for the insurance. It means we can't just pick up and move and hope to find jobs. It means we have to plan ahead a bit more than most people. We have to take certain things into consideration that others don't.

And kids...oh man, that's a whole other issue. I'll sum that one up by saying this: I'm learning that 'being a parent figure' doesn't always have to mean having your own; that maybe we're called to something else right now. And maybe God will use us in ways we never imagined just b/c we don't have kids. Also, that a family can be a family of two.

If you ever need to hash those thoughts out more, you can always email me. I'd be happy to listen and share.

Lovin Lane said...

I loved your blog for a few reasons.. remember i am a mom of a five year old so here is the flip side... 1. I am always curious as to what in the world adults do, which you were not able to answer exactly, but I have been thinking surely this is a problem but no one ever really said anything about it, I was really confused... Still am, but obviously I am not alone.. 2. We currently have great insurance through my husband, but yes it totally freaks us out and makes us feel trapped and yes I told my husband he can never retire until lane is no longer covered, which I am sure freaks my husband out.. but it is terrifying... I freaked out over the 15000 vest... and that was the beginning... God will provide...
#3. which is the best part... We chose to have a son, and our son has CF, something we were just thrown into, outnight, well over lunch... we didnt have an option, we just got sent to the pharmacy... No choice, just a bill and heartbreak.... Obviously when you have a child you love them no matter what, but we made that decision before birth without knowing the future... just like all our other children and of course we would never change it.. He is our blessing... You on the other hand, have a choice, the good times and the bad times have been laid out before you... you KNOW it will not be easy... And you CHOOSE RunSickboyRun... How awesome is that... Obviously you LOVE him... I mean really love him, because that is allot of stress, but I gaurantee you that your relationship will be more precious and beautiful then most... You WILL love deeper and fall harder, but how sad it would be to never love at all in fear of the fall.... and if you choose love it always find a way....

Samuel's Mommy said...

I'm sorry to say I'm reading this on Wednesday evening...OK, Thursday morning and this was Monday's post. I'm just a little behind...
As a CF Mommee, your point #2 struck a chord with me. I often (more that I'd care to admit) pray the "why me, God?" prayer and then go into the entire this-is-not-what-I-planned-for-my-life pity party. We were supposed to a)not have any trouble getting pregnant, which we did and b) when we finally were able to have a baby, he was supposed to be healthy, not have CF, which he does. But I'm starting to realize, more especially in this last week, that my plans are not God's plans and He has chosen me for this purpose. All I am to do is do everything as until God, being CF Mommee and all. It's not easy and it breaks my will more often than I care to admit. But, again, He has chosen me. What an honor. Not to get too spiritual, but I'm constantly reminded of Jeremiah 29:11, my favorite translation is The Message: "I know what I'm doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for." How awesome is that?!?!
And I've gone and written a short novel on your comments page... Sorry. Thanks for sharing from your heart, Mandi.

Stina said...

I am a CFer too!

Here are two videos that the CF foundation did on Health care insurance...

http://www.cff.org/LivingWithCF/Webcasts/ArchivedWebcasts/#CF_Healthcare_Coverage_Part_1:

http://www.cff.org/LivingWithCF/Webcasts/ArchivedWebcasts/#CF_Healthcare_Coverage_Part_2

I live in California and I know there is a program here called GHPP, It's insurance for people with genetic diseases.