Losing a flood of memories

This week has been full of misery, horror, disbelief and relief.  My Mom pretty much lost everything after her home was flooded.  Thank God, she is ok and made it safely out of her home but herself and her neighbors have lost so much.  She is taking it surprisingly well and is remaining positive.  She is currently living with my brother and is keeping a smile on her face.  It shows so much about her character and her upbringing.  She was born in the midst of the depression and grew up using all of her families resources to make a happy family.  I learned many of these ideals and like to think I would also not be attached to the material things of this world however, I am finding this to not be as true as I would like.  You see, I lived with her when she first moved into the cute little home by the river.  As much as I had tried to not like it, it's charm won me over and I can still remember watching the sun shine through the snow as one of the most beautiful sights I have ever seen. 

It was where I celebrated my senior recital, my college graduation, my wedding reception as well as many family get togethers and where we met our adopted family members, who have treated Mom as if she was their parents as well.  I remember waking in the morning to watch the blue herons and bald eagles catch fish.  Where I walked with a flock of wild turkeys to my car.  Where I caught sight of a rare mating ritual of chub fish spawning on our island making the water so turbulent you would have thought it was raining.  Catching frogs with my nieces and nephews, falling into the river on Easter Day (about 3 years in a row), rescuing a lost canoe in winter that had drifted from 'who knows where' and ended up tempting my nephews to go in the river in November to get it.  Various kegs floating by that were lost from college tubing sessions and the buzzing of low flying planes who used the river to navigate.  So many memories. 

The memories will stay with me but the loss of security will haunt me.  Due to crazyness with my in-laws, if anything ever happens to my husband, I have a limited time to move out.  The home I live in will never be my real home as there will always be connotations to keep me from feeling that way.  I think the reason this situation with Mom is effecting me so much is that up to this point, I knew it would be a home for me if I ever had to leave here.  My greatest fear is being homeless and now she is in that position.  She is handling it with such grace and I am a basket case.  I am so thankful that she is ok, she is my rock and I honestly don't know what I would do without her.  She is always on my side and has never quavered from that position.  When I lose my cool, she is right there to help me out.  She has spent her life taking care of her kids now it is our turn to take care of her.  I just feel like my hands are tied and I cannot do enough to help.  I can't even go up there to comfort her because there is no place for me to stay.  I've been calling her almost every day and offered to help out however I can.  I have gotten clothing for her and will be sending it up to help.  I've been praying long and often for her. 

How does this effect my PsA, you are wondering??  I had been doing well this week until all this happened and then I went for the comfort food - potato chips.  This, along with my stress levels soaring, has put me in full on flare mode.  The hands are swollen, the toes having phantom toe pains, the back just not cooperating at all and asthma is even getting in on the action.  Sleep is eluding me and I am just trying to relax and veg a bit.  Instead, I keep finding myself on line looking for houses in the area for Mom and thinking of everything I need to make sure she does.  Previously we decided to take my sister, who is recovering  from a bone marrow transplant, on  a little get a way since she has been home bound for over a year now.  At first we were going to cancel but since there is really nothing more we can do for Mom, we've decided to go anyway.  It's just an overnight vacation to a motel but for her it signifies she is getting better and she needs to get away.  My nephew is now cancer free (YAY!!).  When did my family life become more dramatic than a movie??  Maybe I should write a book. 

Feeling older, yet wiser

I just realized I haven't posted in ... well... forever!  I think it means I am feeling a lot better so I am having fun living my life.  Since my last post, my family has been dealing with so many different events - some good, some bad - but all keeping me on my toes.  With experience comes wisdom and I am learning new things every day.

The new job is going well.  I am having fun and the kiddos are having even more fun!  They really like Music and they are helping me to move more and helping me feel better.  Even on my flare days, they manage to put a smile on my face and raise my spirits.   I have been using my cane on my bad days and they are very caring and very curious.  I just tell them that I am hurting a bit that day and need a little help walking - for the most part that satisfies their curiosity and life continues.  I bit the bullet and talked to my Rhumey about getting handicapped plates and he filled out the paperwork.  I know I won't need it all the time but on the flare days, my feet cannot handle more than about 10 minutes before I have to stop - otherwise I hurt for the next two or so days.  My fellow faculty and staff are aware of my limitations and still love what I do with my students and have been so helpful.  Originally, I didn't really want to tell people about the situation but then I realized, if I am honest and tell them, they won't hold it against me or chalk it up to being lazy or negative things like that.  I am very lucky to have work mates who are caring and respect me for my other talents.

I really struggled with the handicapped plates.  I felt I really wasn't ready for them but honestly, I so needed them when I am hurting.  Last year I had a day where I couldn't walk and had to call in to work as I couldn't get out of bed and that really scared me.  This disease can sneak up on you when you least expect it.  I am starting to understand my flares a bit more and can figure out why or what is causing them.  Lack of sleep is a huge culprit.  I have found the days in which I don't get enough sleep, my hands and toes go numb by the morning and sometimes they don't ease up at all during the day.  It doesn't make much sense to me but it is proving to be a constant.  The problem is that pain can keep me from sleeping which results in a viscous circle.  I have also found I am very sensitive to nightshade vegetables - potatoes and tomatoes (my two favorite veggies) are the main culprits.  I also feel processed sugar may be a trigger as well - Christmas celebrations resulted in a flare and that was the main difference in my diet so I will try some experiments this summer. 

The real eye opener for me is that since the diagnosis, I have given myself permission to slow down when things are hurting.  Before, when I didn't know what was wrong, I pushed on and kept myself moving which often resulted in more pain, confusion, frustration, and downright grumpiness.  Now, when I feel I am pushing things too much, I allow myself to stop so that I am not paying for it for days.  If anyone has a problem with it, I politely tell them if I don't stop now, I will be the one paying for it tomorrow.  I have to pick and choose what is most important.  During the school year, my husband and job are the top priorities.  Other things, like shows, choirs, and extra activities are on hold until the summer when I can make it a priority yet still have down time if I take on  too much.  I miss these things but I have to get my priorities in line and think of things that way.  I may hurt some peoples feelings but for once in my life, I have to do what is right for me.  It has been a very long time for me to figure this out but I am not being selfish, I am helping my relationships by having quality time with my friends, not quantity time that hurts everyone (myself by having pain, others by not enjoying the time we spend together because I am grumpy and hurt).  True friends will understand and others will just have to realize that is what is best for everyone. 

I haven't posted in quite a while but things are getting pretty hard around here.  My sister's transplant is on Monday and things are in the process already - that part is good because something is finally going  to be done to help her.  I know it has only been a few months, but our other sister that we lost died within 6 weeks of her diagnosis so that memory keeps sneaking back into my mind.  We got the mix up taken care of and everyone understands except for my heart which still thinks I am not doing enough to help.  The emotions are on overload right now and to add insult to injury, I found out hubby has not been honest with me.  Last night I just shut down - went numb - my protective wall went up.  I didn't want to be touched, consoled, or even talked to.  I still don't but I have to get on with my life weather I like it or not.  Part of me just wants to throw in the towel and get amnesia or something.  Hubby wants one thing and I don't know what I want right now.  I ended up eating chili and potato chips yesterday by accident so I have a feeling I will be hurting today.  At least I can look forward to seeing my sister tomorrow but that means I have to clean tonight.  Hubby is working late so I won't have to face him until late tonight and I just may be in bed asleep when he gets home.  I am too physically, emotionally and mentally exhausted to try to figure out an answer.  Right now I just want to fade away into nothingness. 

We got the fundraiser going and I am glad I did, however, I am horrible about asking people for donations.  I keep feeling like it is personal if they don't do it.  I guess I think everyone should be charitable and now that my family needs it, it hurts when people say no.  I hope that if the tables are turned that I would still be charitable to them but I honestly don't know.  I do not know what they are going through and everyone is having to scrimp in this economy right now (including myself) so I know they have their reasons but my focus is my family right now.  I called the rheumy's office to see if it was safe for my sister to be around me and they switched it around to be about me and didn't answer the question.  Honestly, I could care less about my health right now and even if I couldn't handle it I would try anyway when a family member is in danger.  I just don't want my situation to endanger her.  I just want everything to be done somehow.  Meanwhile I just need to figure out what to do to keep my sanity.

Stress, confusion, and miscommunications

Life can be so scary at times and this is one of them.  My sister needs me to help her out this summer.  If all of this would have happened last year, I would be there in a second but now since I have been diagnosed, I am scared to death.  Her transplant is happening later this month.  Mom will be coming down to help her for a while but the truth of the matter is that Mom is 78 years young and it may be too much for her.  I told her that I would help out, meaning I would come help and give Mom a break every so often but wear a mask so I wouldn't contaminate her.  Somehow, this was miscommunicated and became that I would stay with her for the two months over the summer.  Normally, I would be there and do it but now I am on immunity supressing meds that may make me a germ carrier.  I am so scared that I may give her germs.  She and I talked yesterday and I shared my concerns with her.  Honestly, if she passes because of something that I could have prevented, I would never forgive myself.  My heart says I need to help out and take over after school is out but my head says I can't take the chance of hurting her.  I don't know what to do.  My heart usually wins out over my head but I now have to take my husbands thoughts into consideration and he won't tell me.  I really feel like I am in this totally alone - not the first time I have felt this way.  Sometimes getting him to talk to me about his feelings is like pulling teeth.  Face it, I am alone in this endeavor and it is up to me to do the right thing, if I ever figure out what the right thing is.  I am sure things will be clearer after I finally get some sleep but sleep has eluded me for two nights now.  I assured my sister that we will figure it out and she doesn't have to worry about it.  I tried out for a show for this summer (before I knew what was happening with the transplant and such) and got a minor part but will most likely have to back out of the show with all of this happening, so I guess I will call the director tonight.  I am sure they will understand but I hope they don't hold it against me.  I had better get going as I need to collect my thoughts before I get to school. 

Weather may be effecting me today

The body has been doing quite well as of late but late yesterday, I started noticing some new symptoms.  My right shoulder started giving me problems again.  Last summer, during my worst flare, I had some weird things happen with this same shoulder.  It felt as if it was out of place (this 'out of place' feeling happens quite often with me and PsA as when the joint swells, it feels as if it slips out of place as well).  Food wise, I didn't eat anything that would have caused it, but my hands are stiffer this morning (probably an 8) and my feet were worse yesterday evening (my left foot is numb almost to the heel).  Wait, yesterday, McDonalds accidentally gave me hash browns and I did eat them - hmmmm.  The temp is dropping today and I just checked the weather - thunderstorms - maybe that is why all the issues this morning.  Despite the higher pain levels, today, I did get a good nights sleep last night and that is more important for me.  I can deal with pain, but lack of sleep messes up everything.  When I can't think straight because I am too tired, I might as well just give up on getting anything done or having the patience to deal with others. 

The good news is that I am having more 'good' days than 'bad' ones and I have to remember that I am one of the lucky ones.  

New Phobias - just what I need. . .

Well, I found out I have a new fear that is associated with PsA.  I was suffering from cramps today and the thing that works best for me is to soak in a hot tub.  I have avoided it since we moved into this house as the tub is small and I am leary of being able to get out of it.  Today, I wasn't feeling well and thought it would be a good thing to help me.  Apparently my fear of getting stuck in the tub has become a phobia as I could not get myself to get in it.  I sat on the edge of the tub with my feet in it for about 20 minutes before I abandoned the idea.  Ideally, I would like to have a sit down tub installed in that bedroom but it is quite expensive and since I am more than able to shower in the other bath room, I haven't pursued the idea.  I don't think hubby would go for it anyway and since the place is technically not mine, I would loose a lot of money if I invested in it and then was forced to leave.  I hate having to make decisions with that in mind but I really have no choice.  If I had my way, we would get a lap pool (small pool with flowing water - a swimming treadmill type thing) and it would be heated up nice, some can even be treated like a hot tub.  Ahhh yes, that would be soooo nice. 

Not the best weekend.  I enjoyed seeing all my cousins after so long, but I am hurting like crazy this morning.  Driving 12 hours in two days didn't help any and neither did the huge fight with hubby yesterday.  I thought he was understanding better but he doesn't.  I ended up having to move the turtle tank and now I am more swollen than ever.  I'm not sure if I am going to be able to handle work today but I really don't have any choice.  I pretty much told him that I was thinking about leaving because the relationship was so completely one sided and wasn't fair to me - especially now that I am having these health problems.  I have spent my life helping others and now I need some help and there is no one to help me.  Our situation is so atypical that no one can really understand what we have to do to keep things in balance.  All of the 'perks' one gets from marriage, a sense of security, a joining of lives to be one, joint finances, has been forced to not happen due to this stupid trust.  I don't care about the money, but what I do care about is us having a home that belongs to us, not just him.  His family has informed me that if anything happens to him, I cannot live here.  I have no say in how to decorate the house, replace the flooring or anything that effects it.  However, I am expected to pay for repairs and  clean it to their standards (which are so high that I couldn't reach their standards even before the full onset of PsA).  I offered to have people come in to clean it and that is not accepted because that would mean strangers would be in the house.  They even had a fit when I had friends come in to help pack up after his folks passed away (I was expected to do it all - you know, I am just the housekeeper and cook, not a family member nor his wife), yet I could not throw anything away unless I had his permission but he wouldn't come with me to work on it.  More and more ill feelings are brought up as things progress.  He keeps telling me things are going to change but he puts no effort into fixing things.  That is why I think I am going to have to leave before anything will change.  I entered into the marriage as a partnership - everything 50/50 but I pay for most everything, I have to do the work around the house, and I am the one who feels neglected.  He says he loves me, he thinks all of this is about me not wanting to clean the house.  There is no room for me at this house and he has no answer for that.  This house is a shrine to his parents and I have no outlet, no claim to it nor do I feel welcome here.  I am tired, I hurt both physically and mentally and I am ready to just chuck everything.  Why should I even try if nothing is good enough and no one gives a care if I am happy let alone even ok.  There are more issues that I do not want to write on here and that are too personal for anyone to know but he seems to think there is no problems.  Why should he, he has a hot meal every night, a housekeeper to bitch at when it doesn't get cleaned up, he has no real investment in the marriage because he has everything he wants out of it.  He says it bothers him that I am not happy but he doesn't do anything about it.  Just bitches more when things aren't how he wants them to be.  He complains that I spend too much time online yet he doesn't come out of his bedroom to spend any time with me.  Yet if he asks me to come in there and watch his stupid gameshows I am expected to drop everything and run to his side.  It isn't going to happen anymore.  If I leave, he is going to have to make some major changes in his lifestyle so that he can afford to live here without my income.  I mention this to him and it doesn't bother him because he doesn't think I will do it.  The only family I have down here is him and my sister who has her own problems to deal with right now and he knows I have no where to go so I am stuck.  I offered to still help him with rent and such and I would move into the other bedroom but that wasn't an option either.  In other words, I have no options except to move out since things are not going to change around here.  The last thing I want to do is admit failure in yet another aspect of my life.  I gave up so much to be with him and he has given up absolutely nothing.  I did what was traditionally expected of the wife, I even had the wedding down here instead of in my hometown.  I give up, I do not have the energy to deal with all this -  I just want to get out and get away from the krap.