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Monday, June 9, 2014

To tell or not to tell....that is the question!

I have really been struggling a lot with whether or not to tell certain people about my OCD.  Currently my only family that knows are my husband and daughter.  I have not told my parents, sister, other relatives or friends about this.  My husbands family also does not know (at least that is what he tells me).  I suppose a lot of it is because I'm ashamed of the behavior.  Also I just don't feel like a lot of people understand OCD, and I worry in some ways it might make it worse to "let the cat out of the bag".  Of course living with my husband made it necessary to tell him.  It got to the point where it was pretty obvious something was wrong and I told him I had OCD about 2 1/2 years ago.  I did not have OCD when we got married in 2001, but it started developing about 2 years after we got married and has slowly gotten worse through the years.  A lot of the initial behaviors were things where no one would ever know and I kept it to myself for a LONG time.  I would classify myself as mild-moderate at the time I told him which was December 2011.  At the present time, I would now classify myself as severe, almost borderline extreme.  Also a lot of my obsessions currently revolve around feeling like my husband is contaminated, so it has been very difficult for our marriage and obviously very difficult to hide.  Ironically our marriage troubles and stress is kind of what triggered my OCD, so it feels like a vicious cycle.  Anyway...I'm rambling. I tend to do that in my posts, don't I?  Even though my husband knows I have OCD, he does not know a lot about my particular symptoms.  It's become something I've been very good at hiding through the years, but it's becoming increasingly harder to do that.  He made the comment about a week ago that things seem worse....and I thought to myself...."if only you knew how bad they really are".  He is not someone that I feel emotionally comfortable with right now, so it's very hard to talk about my OCD with him.  I continue to hide most behaviors from him, although some are very obvious--namely when I'm avoiding him or acting like I'm scared to death of him.  Avoidance has become one of my biggest compulsions when dealing with the contamination issues, and I've started avoiding my family (parents, sister and relatives).  I don't want to go to social gatherings because I can't deal with people touching me and I'm not going to eat there and I don't want to hug anyone....so I just stay home.  Then my family things I'm being rude or just don't want to come, which has probably created a lot of hard feelings and resentment.  We've had several get-togethers lately with my family and I've avoided all of them, even things like my grandma's 85th birthday party and Easter, simply because I couldn't stand the thought of hugging my relatives or sitting down on their couches.  That is so sad, but so true.  My daughter turned 11 a couple of weeks ago and for the first time ever, I did not plan a birthday party with our families over.  Too many people to keep track of.  I didn't want people using the bathroom that I use or sitting on our couches or touching things around the house, because I wouldn't be able to see what was going on.  My parents ended up bringing over her birthday gift last week, and I suggested they bring their dog over to meet our puppy...just so I had an excuse that we would all be outside.  I didn't want people in here again or sitting on our furniture.  Then my dad came over and gave my daughter a big hug and I felt mortified, and put all her clothes aside, and I later threw them away.  We went to a wedding this weekend and I felt horribly contaminated after that.  My father in law (who concerns me at about the same level as my husband because they both have the same hobbies of farming and machine restoration) touched my clothes and my daughters dress just trying to say hello and be friendly, and I had to hug a few people there.  I wouldn't even wear my seatbelt home from the wedding because I didn't want to contaminate it with my now contaminated clothes.  I didn't go to the reception because I just needed to get home and "decontaminate myself" as quickly as possible.  This meant removing all clothes worn there, and I know I won't wear them again.  I threw my dress and my daughters dress aside and will get rid of those.  I went outside and cleaned off my seat in the car twice with soapy water to remove any contamination from the clothes after hugging people and sitting in the pew at church....I feel so horrible saying that, but this is true, and this is where I'm at.  Everything just feels contaminated to me when I am out in public.  I had several appointments for my daughter and I last week and I bought special inexpensive outfits for us that we would wear to those appointments and then I knew I wouldn't wear them again afterward.  We visited the dentist for the first time in a year (that is a whole other blog post to write about soon and why I have avoided that for so long).  They always wipe down the chair with chemical wipes between patients.  I knew this ahead of time, and so this was the main purpose for buying different clothes.  I didn't want chemicals on my clothes and I knew I wouldn't want to wear them again.  So we went to the dentist in those clothes and I bought special  little pads (like someone who has incontinence might put down on their bed) to put down on the seat, so that the now contaminated clothes wouldn't ruin the seats in my car.  The day after that I had my own doctors appointment with a family doctor (to check my hypothyroidism).  I of course can't stand the thought of sitting in waiting rooms and doctors office chairs, so I wore the contaminated clothing there again so I didn't have to ruin my regular clothes.  Same issue again when my daughter went to the orthodonist later that week.  I had her wear the same pants she wore to the dentist.  Now that week is past us and all of those clothes are being disposed of.  Thank goodness that week is over....that was very stressful for me.  Once we were in the "diirty clothes" for the day, we remained in those until we showered at night.  We never sat on the "safe couch" in the living room in order to not contaminate that.  Once we showered and put on clean clothes, then we were clean and we could sit on our normal couch.  I also hate how I draw my daughter into these compulsions too.  Just a little background information for ya--I also like to keep this stuff for my own documentation purposes.  So anyway.....back to my original question in the title of this post...."to tell or not to tell, that is the question!"  Sometimes I wonder how things would be if I chose to tell people.  If I tell my parents I have OCD, then it may make more sense.  There is an explanation for why I can not eat at peoples gatherings and why I don't come to stuff.  What concerns me is that since my mom and her family (her mom and sisters) are very close, I'm not sure if she would be able to keep this from her family if I asked her to do that.  I definitely am not ready for my grandparents and extended family to know about this, maybe not ever.  I think I haven't eaten as so many family gatherings by now, that it doesn't even phase my family anymore....they probably think its odd, but don't push it anymore, and frankly just don't expect my family to show up for meals at family gatherings.  One of the main reasons I continue to avoid is because I don't want to hug people and I don't want to sit on their couches or kitchen chairs, because I question the cleanliness of their clothes and their furniture and my mind just keeps ruminating about everything that could have happened (ex. my relatives have dogs...who knows if they've peed on the couches.  I saw my aunt clean up dog pee on one of her couches once.  Darn OCD makes you remember everything!!!!)  I could probably go to a function, but I know I would end up throwing clothes away, and I HATE DOING THAT!!!!!!  I really do.  My niece's birthday is in August and she will be 4.  My sister has a knack for taking her around to everyone after she opens her gifts and telling her to give people kisses and hugs.  I don't want a kiss and hug.  I feel so horribly awful saying that, but I don't.  I want to celebrate my nieces's birthday.  I want to see my family.  I do NOT want a hug and kiss from my niece, and so that is probably what will keep me from going to the celebration.  I feel like a horrible aunt saying that.  Feels good to have this outlet on my blog where I can get it out though.  That is another instance where I feel like maybe if my family knew that I had OCD and didn't want to be touched by people, that I could still take part in celebrations, but at least my parents and sister would know that I don't want to be touched....so my sister could just not bring her niece over to me or "force" her to give me a hug afterward.  That still doesn't solve the problem of my grandparents and aunts or cousins hugging me.  I just don't want to be touched!!!!  Also if my in-laws were aware of my OCD, then maybe they would realize I don't need a hug or a pat on the arm to say hello either.  Am I sounding totally rude yet or what??!!!???  The bottom line is I just don't know if I want people to know yet.  But when I don't tell them, I know I come off as being extremely rude or avoidant and I don't want to create further tension with my family or my husbands family for that matter.  People just don't get the whole OCD thing.  They really have no idea where our thought processes are capable of going, and how it mentally tortures us through even the most mundane of activities.  Most people would have no idea where our brains can go on simple thought and how we can be taken from Point A to Point B and all of the possible things that could happen in between.  How we give into what the OCD tells us, in order to be free of the thought.  My husband doesn't even get this yet and he has known about it for 2 1/2 years, so how are my parents and sister going to understand, when they don't even live with me and can't see my "OCD in action" everyday.  I'm just curious for all of you out there.....who all knows in your life, and how did you make the decision to tell them?  Are you glad that you told people or do you regret it?  Do most people try to understand or do they now treat you differently?  That is what I am struggling with right now.  Do I keep it a secret or do I tell?

17 comments:

  1. I really sympathize with you. I know how sad/frustrating/embarrassing it is to not be able to hug your own family members. To not be able to ever truly relax. To constantly have part (or all) of your mind devoted to some anxious thought. OCD can make life terrible. Please, please, seek out help.

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    1. Thanks for your comment! It sounds like you have, or have had, experience with contamination issues? It is sad and frustrating. And you are correct, most all of the time my mind is filled with thoughts that I can't stop. My heart goes out to you as well...

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    2. Yeah contamination is my big issue. It's getting better, but definitely still a problem for me.

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  2. Ah, hopeful, you sound way too much like me :-(. We have many very similar issues with contamination OCD, although I've never had issues with needing to actually throw away clothing. I do have a very difficult time with laundry but it manifests a little differently. For me, all dirty laundry feels really gross, and once my dirty clothes are in the hamper, I don't want to touch any of it (the hamper, dirty clothes) without washing my hands after. Actually doing laundry is a pretty involved process that usually involves washing my hands several times, and I still feel like I want a shower after dealing with it, even when I know I haven't touched anything except with my hands which I have washed thoroughly (up to my elbows "just in case"). It has a way of making me feel dirty all over. I do better with a front-load washer, as I can at least clean the door and all very thoroughly, and as long as I'm careful, keep it clean, but I have major difficult with a top-load washer, as it never feels clean. No matter how thoroughly I try to wipe it down, the second I start dumping in dirty clothes, the whole top of the washer feels dirty. Sigh...I really feel your pain.

    With regards to telling people, I think it is a mixed bag. I've never tried to keep my issues super secret but I don't shout it to the world either. I have found that the longer this has gone on, of course the more people will know about it. But, I have also found that my desire to appear "normal" is stronger when I am around people who don't know. When I'm around my family, they all know and it makes it easier to be open about it but also give in more easily to the behaviors. At this point though, you really should tell your family. They will not be able to understand, but at least they will have a better idea of why you have been pulling away from them, that it's not that you don't love them but that you are sick and dealing with something that has nothing to do with them.

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  3. And as difficult as it may be for you, I think it's probably time to talk to your husband more about what has really been going on with you and how bad it has really gotten. It's a super tough situation, and I've been there. I also think some of my issues probably started as a result of how I was feeling in my marriage and then as things got worse with him, they also got worse with me, like a downward spiral. But my guess is that he probably already guesses that there is more to it that he doesn't see. And even if he doesn't understand (which he won't because he does not live with it like you do), working so hard to keep so many secrets from him isn't healthy either.

    Unfortunately, my husband finally decided he couldn't deal with it any longer, and we are recently divorced. And we are people who do not believe in divorce, and I absolutely did not want it. And I didn't really think he would end up making that decision, but that is something you really should prepare yourself for as well. You really just don't know what will finally push a person to that point, and he may be closer than you think. I know how difficult it is for you (believe me, I really really know), but it's pretty awful for him too. I read on one of your entries that he said he feels like he's being treated like a leper, and I can't imagine how awful that must feel to have so little freedom in your own home. To live with a person who can't be within 10 feet of you for fear of being contaminated by you. To live in a house where the other person is so scared of where you go and what you'll touch that you feel them hovering around, never wanting to leave because they want to keep tabs on where you go and what you touch. And again, believe me, I've been there, someone just like you who has felt the exact same way around their husband. It's awful on both sides and it is extremely important to remember that, because I know how easy it is for those of us dealing with OCD to get so caught up in how hard it makes it for us, but it's hard on them too.

    Not lecturing here, so please don't think that. Just trying to encourage you to think about it from his perspective. My therapist told me that I needed to stop trying to get people to understand what this is like for me, because the only way they will understand is if they have gone through it themselves (not something I would wish on my worst enemy). And that advice is still hard for me, as I still find myself wanting to explain it, but in the end, it just creates more frustration. Be thankful he doesn't understand because it means he does not have it.

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    1. Thanks Jennifer--I really truly appreciate your very well thought out reply to me. It is so amazing to me when I think about the Internet and how it can pull people together, that would otherwise not have the chance to connect. First of all I want to say how sorry I am about your recent divorce. It makes me sad that this illness has the potential to cause such devestating effects on a marriage. My marriage is close to that too. In fact my husband I have had several very serious discussions about it recently. He has flat out told me that he doesn't know if he can keep doing this, and I have told him that we really do need to sit down and discuss what is going on...not just a one time discussion, but an openess about the OCD, something that is constantly discussed. My husband is not a great communicator so unfortunately it makes it really hard. He tends to get to his breaking point of desperation and then "brushes it under the rug" until the next big thing happens. I think I may write him letters for awhile just so I know I'm sharing what needs to be done. I think he may get really upset if he knows what is truly going on. You are right, I have hidden a lot of behaviors from him. Financially the OCD has costed a lot too, and I don't think he has any idea of the amount of things that I have thrown away and the money that I have wasted on this illness. I am almost scared of his reaction too. I thank you for trying to get me to understand his point of view with the whole OCD. I do realize that it is hard for him too, believe me when I say sometimes I think it would be for the best if we did not live together. But we also are a family that does not believe in divorce. I am a Christian and I know that I could not make that decision to file. In my heart I believe that he would not either, but as you mentioned..you didn't feel your husband would get to that point, and he did. I am so sorry. OCD is just devestating and wreaks havoc to everyone involved. Can I ask how you are doing now? Are you receiving treatment and/or are you doing better? I really hope so. I also wonder if you've commented on my blog before? Just curious? I had a reader a couple of months ago who commented their marriage ended (and was anonymous commenter at that time). I am also sorry that you had to find new homes for your cats. That has to be devestating too, especially after your divorce. We have a dog that has caused me some major issues with my OCD and I know my daughter would be devestated if we had to rehome her. Our pup vomits a lot in her bed and it bothers me a lot to have her brush up against my clothes. I threw away an outfit the other day because she jumped up on me with her paws (she has never done that before), and all I could think about was the pee/poop that could be on her paws from walking around outside in our yard). Sorry, gross, but true! Also I am so busy with my OCD rituals that she spends a lot of time in her kennel and it is not fair to her. So I truly understand how that is. Please let me know if you have a blog that I can follow.....again I really appreciate your advice. I have found the Internet community to be such a great place. There are some really awesome people out here that want to help someone (you included!)

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    2. Hi hopeful-
      Nope, no blog and I have not commented here before. I actually just found your page yesterday after doing some searches on some of this stuff. I know I have done some google searches in the past but had not really found much that seemed to speak to what was going on with me particularly with the contamination issues (although I probably didn't dig too deep at the time to be fair).

      On treatment, the short answer is no I have not really gotten treatment and am not currently in treatment, but it's really a pretty complicated story. When all of this started, it went downhill so fast that by the time I knew I really had a problem, I really really really had a problem. So when I found a therapist, we were really putting out fires more than anything else (mostly centered around trying to find somewhere for my cats to go since they were such a huge trigger). By the time that happened, I had lost a good 20 pounds that I didn't have to lose and was utterly exhausted, like to the very core of my bones exhausted (I pretty much cleaned my house nonstop for a good 4 or 5 months, sometimes on my feet through the night for a solid 24 or more hours at least 3 or 4 times a week). After all this, I needed a rest and a break, and my husband and I decided we needed a change of scenery for the winter (which also meant not being near my therapist for a while). Once we got back, things were a little better for a while, but then one night we got back from being gone over Christmas to a flooded basement from a burst pipe. Talk about full-on panic attack (me!). After dealing with all of that (what a complete and utter nightmare), which included lots of different people in our house (we had to live in a hotel for a month while getting plumbing and all restored) and eventually having a crew to come in to repair everything, I knew I couldn't live in that house anymore, so we ended up first in a short-term furnished rental, then in 2 different places over the next 2 years, all of which turned into bad situations for me to the point where my husband was back living with friends again because I was cleaning so much. All that to say that I always felt like I was bouncing around too much and too unsettled to really begin any sort of effective therapy. And although we did see my original therapist some, we were mostly dealing with relationship issues because things were getting so bad between us (so again, putting out fires).

      Now that the divorce is behind me, my current focus is to get settled (we are remodeling my grandparents old house which is next door to my parents house and I am hoping that I will be moving in very soon) so that I can (hopefully) finally feel settled and feel like I have some breathing room to really start putting my efforts into working on this. I actually did find a therapist that I really like (I wanted to try hypnotherapy first and see if that is helpful), but unfortunately, this house project has eaten up more of my money than I had originally planned (argh), so I will probably be faced with doing most of this on my own (at least for now). But I do have some ideas of things to try, mostly involving some supplements (I have been researching this like crazy, as I am really not interested in meds) and some alternative approaches. And I was looking at some books/workbooks today at Barnes and Noble which looked promising, so I am hoping I can make some progress, at least until I can find enough $$ for a few therapy sessions.

      And yes! It is so good to have someone else's perspective and story. I do find that I have to be careful reading through other people's experiences though, because I don't want to pick up anyone else's OCD habits (I have enough of my own as it is! :-)), and vice versa...I hesitate to delve into specifics too much, as I would hate for my issues to rub off on anyone else who is already susceptible to those sorts of things :-).

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    3. Oh! And thank you so much for your sweet words regarding my divorce. We are both Christians as well, and I never ever thought I would be in this position. Ever. I believe (still) that any relationship can be saved, no matter how bad, because I know it happens all the time, even with infidelity (and requires tons of work on both sides, but it can be done). But, if one person makes that decision to end it, it may not be possible to change their mind. And I think that's the point that he got to, and there was nothing I could say or do at that point to make a difference. And I thought the OCD stuff I was dealing with was hitting rock bottom, but the divorce was worse. The day he sat in our therapist's office and said that's what he wanted, it was like being gutted from the inside out. I know that for some people, divorce may seem like the easy way out, but there is nothing easy about this. And we didn't have kids, and I really can't imagine how much harder that would be. And when I read your story about where you and your husband are now, I feel like that could have been me a year ago saying the exact same thing. My heart just goes out to you, because I know how that feels and how hard it is.

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    5. (made me start another comment, cuz I wrote too much! :))
      But the non OCD side, my rational side, really wants my marriage to work, even though it's always been a difficult marriage--with MANY problems outside of the OCD too. My husband said something today about me "choosing my OCD before our marriage" and that really struck me. It is not a choice, something I need to explore and write about on my blog soon. The reason that OCD gets "prioritized" over relationships, just shows how messed up the disorder is, and how much control it has over our lives. I am interested in the supplements that you have read about? I am opposed to medication myself, although have been seriously considering it as of more recently. I have not even told my general practitioner doctor about my OCD. It truly is a disease where people suffer in silence...so sad. I have heard a lot of people do a lot better on medication, but I just don't want to rely on that either. The idea of true Exposure and Response Prevention therapy is so frightening, that is why I am currently just doing self treatment for now, and taking the tiniest baby steps to start making some progress. Some days it really doesn't seem like it though, and sometimes I wonder if I am even working on the right things, maybe I should be focusing on the things that are really impacting my life...but of course those are the most difficult to face. As far as books for you to read, I have read a lot of OCD books. I do a lot of reading others stories on the Internet, to get hope more than anything for dealing with the disorder. Jonathan Grayson wrote "Freedom from Obsessive Compulsive Disorder", but his book is not an approach that I would personally want to take. I believe that it probably does give the best chance of getting rid of OCD, but I have a hard time with his approach. Brain Lock by Jeffrey Swartz (I think that is the right spelling of his name) is a good book too that I have referred to. It is not so much exposure and response prevention, but rather takes you through the relabeling of a though, the reattribution of it to OCD and gets you to refocus on something else. I found it somewhat helpful. I am always trying to find good books out there too. I am really worried about you. It sounds like you have a lot going on in your life, and I hope that you have some supportive friends in your life, as you are recently divorced. I would love to stay in touch with you, either through this blog or through personal email. If you would ever like to exchange emails, I think it would be interesting to keep touch with each other and be a support system for one another. Hope you are doing okay today...

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    8. Hi Karen-you removed your reply so I assume you got my email? Just making sure :)

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  4. Ah this is a tough one. I have slowly come out, until the point just in the last few weeks when I let EVERYONE in my world know cause I was trying to raise funds for the OCD Walk I was taking part in. But to be honest, a ton of people have found out in the last couple if years before that anyway, but now literally everyone knows. I think a lot of it depends on how you are feeling. I still have OCD, obviously, but I'm (usually) feeling very strong and confident these days. If anyone dared to give me a hard time about it, well, they would get an earful back (but it would be polite, but an earful nonetheless). But I also have a very supportive group of people around me too, and that gives me a strong feeling of safety.

    Are there support groups in your area? You might benefit from that. Also, it might be helpful to bring your husband to therapy sessions with you. That's what I did. It really does take time for others to understand OCD. The thinking is so skewed that I think a lot of people just have a difficult time comprehending it.

    If you do decide to tell your family, as hard as it is, don't do it to get enabling help from them. It will only make you more ill. I really didn't want to believe this for many years, but the only way OCD will get better is to fight it and slowly face the things we are afraid of. If your family participates by not hugging you, etc., they will only be adding to your illness.

    There is still lots of hope for you. Don't give up! Keep fighting!

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    1. 71 and sunny-I was reading through your blog some yesterday and was super impressed by some of the incidents you described, like dropping your glasses case on the floor of the airport bathroom (yep, I would have had to somehow wipe that off) and for sure, the time where you were leaving the church building and had to help the lady with the trash(!!). Yep, after standing next to the dumpster and seeing trash hit my leg and shoe, I would have been the one completely panicking/crying all the way home only to wash everything on me (shoes and all), showering and wiping down the car, so major kudos to you on all of that!!!

      And to hopeful, on telling people, my situation got really bad really fast so that people in my family found out rather quickly (even though they lived several states away). It was just not something I could easily hide, as it got so bad so fast that my husband was living with friends for a few months because I was cleaning my house all the time (as in spending a solid 24 hours, even up to 36 hours) cleaning my house, doing this several times a week. We also had 2 cats at the time and I had to make the decision to find them a new home which was completely heartbreaking but absolutely necessary. So I spoke pretty freely about all of this to my parents and sister and also my best friend. In addition, since my husband was staying with friends, they of course knew as well. It is scary having people know about what's going on, because it is easy to feel like you are going completely crazy sometimes. But I also found that as I started talking to people about it, I was completely amazed at how many of them could actually relate to me in some way or another. Like my best friend from childhood who had always struggled with minor eating disorders (very similar to OCD with many of the same thought processes), or another of my close friends that when I started talking about this with her she told me she had some very similar struggles (and had also had to give up her dogs because of it). I had another friend from childhood who I found out through some mutual friends/family that had also dealt with OCD stuff (her kids had to stay with extended family at one point because she was struggling with contamination/cleaning issues). My sister has also struggled some with it although not to the same extent as me.

      So even though most people won't be able to relate to it (or at least the degree to which you are experiencing it), you may be surprised at what you find, as I think there are tons of people out there experiencing some of this to one degree or another, more than what you think because no one wants to talk about it.

      And I have to agree with what was said above about your family enabling you. But that is kind of the mixed bag with telling people. On the one hand, I think it is good to be honest with people, especially your family, since they already know something is up. But on the other hand, it's like I said above, when people don't know I have to work harder to appear normal. When I'm with family/friends who know my issues, it is easier to give in to them at the same time so that is something to guard against for sure.

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    2. Monique--I don't have any support areas in my area, at least none that I know of. I really appreciate your comments. You have been a very helpful and supportive to me, as I start to fight this OCD off. You have given me a lot of encouragement, I hope you know how much it means. I agree with what you said--I do worry about if I tell my family, then it does just create an "excuse", so that I don't have to hug. I'm not sure at this point that I'm ready to fight off some of those things yet, but I'm trying to start somewhere. I'm still mulling it over, but would definitely post if I told anyone about it!

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    3. Jennifer, thank you so much for your really kind comments. You are very sweet.

      I hope you are doing well right now and that the OCD is not being too mean to you at the moment!

      Thank you for your kind comments as well, Karen. : )

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