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. 

One Crazy weekend

What a crazy weekend.  Hubby fell and hurt himself on Friday, I received word that one of my Aunt's was dying and passed away on Saturday, and today was auditions for the local theater.  It has been an emotional roller coaster.  My Aunt was a wonderful person who was an inspiration to me.  She and her husband raised 12 great kids together.  She gave me a place to stay while I was student teaching and has always been so sweet and nice to me despite the fact that I was the youngest of all the cousins.  She will be greatly missed.  Hubby is feeling better but still hurting.  Surprisingly, despite all the drama, I am feeling pretty good.
Well, I must be feeling better because I went to auditions today.  I haven't been in a show for a couple years but I miss it so much.  A few years ago, I landed the lead role in "Nunsense", I was the Rev. Mother Superior.   I allowed myself to audition for summer shows only since I don't have to work during this time.  The show I really want to do will be 3 hour rehearsals and in the evening so I think I would be more apt to be able to handle it.  I actually had to dance today as well.  Over all I did quite well but boy am I out of shape.  The show I want to get is very campy and funny - right up my alley.  I know I am taking a chance not knowing how my body is going to react but if I don't take the chance I will never know.  My medication seems to be working well and honestly, I want to do this while I still can do it.  Originally, I wanted to do musicals for a living but knowing the chances were slim, I went into education instead.

Friends and PsA

Last night, I was finally feeling able to go out with some friends and hang out for a while.  For the last year or so, it has been really hard to get together with friends as they always want to meet at night after work and I just don't have any energy left.  We all met in a water exercise class and due to different reasons, only a few of us are still in the class so we occasionally meet at a local watering hole and enjoy each others company.  One of the members has some health issues herself and completely understands my situation, however another keeps comparing PsA with Osteo and trying to tell me how to deal with it.  I have tried explaining that it is very different but she won't hear of it.  She is older than me and feels she knows more about it since she has had fibro problems as well as her arthritis and tends to make out that her problems are more acute and she can help me deal with it.  I love her dearly but I really don't need this right now as I am trying to figure out how to deal with it and  I actually have the disease.  I want to help others understand, but I keep thinking I must be coming across as feeling sorry for myself or some other negative way but yet I want them to understand why I cannot do everything anymore.  It is hard enough for me to figure out how things effect me without others trying to  tell me what I should or should not do.  I hide the situation well and do not complain a lot (or at least I try to) but I do know what my limit is and how much I can handle.  It is just so frustrating.  The other friend who has had a lot of health issues as of late, and I feel so bad that I haven't been there for her during this trying time but she does understand as she is limited on what she can do as well.
Meanwhile, my body is doing ok this week - only minor aches and pains, nothing too substantial.  I'm still avoiding nightshades but did have some pizza with just a little sauce this week and everything is still in check.  Along with the pizza, were cinnimon breadsticks which are wonderful.  Still trying to be a good girl and lose a bit of weight.  I'm looking forward to the weather warming up so I can get my bike out :)

First show of the season

Well, I went to the first fiber show of the season and survived.  I really missed my sister, it just isn't the same without her.  We are a team, she is the salesperson and I am the demonstrator.  It is going to be a hard adjustment to do these without her.  I tried to simplify and only took the fiber and yarn leaving most of the finished works at home but still managed to make my toes ache.  As far as set up and take down, I did pretty well.  I had to stop and rest my back when loading the car but overall, I can't complain.  By the time I got home, I was exhausted and still haven't taken things out of the car - that will be the plan for tomorrow. 

I managed to eat properly and avoided the tomatoes and potatoes but boy was I tested when I drove by a Fazoli's fast food.  They don't have them around my house anymore so I tend to stop when I see them.  Being Italian food, tomatoes are everywhere but I was careful and picked foods that did not have red sauce nor potatoes and managed to get my Italian food fix without them. 

I sat most of the day but my toes have been really bothering me.  I am even thinking about giving them a wax treatment to see if that helps - not really sure if my feet will fit in the container but I think it is worth a try.  It isn't even 8 pm but I think I am heading to bed.  I have to get back into the routine again but meanwhile my eyelids are super heavy.  Good night all!

Life changes everything

Not the best morning, hands and elbows are hurting.  On the scale I would say it is about a 5.  The weather has been up and down between rain, snow and sleet.  I did well regarding eating and even included some garlic to help with inflammation, however my right hand is swollen and my right elbow as well.  Both feet are hurting as well.  Neck is stiff  and lower back is feeling stiff as well.  My meds haven't kicked in yet but hopefully will help later.  Getting dressed hurt as well but I pushed through and even wore socks. 

There are so many things we take for granted.  Simple acts like putting on your socks can be comprimised with this disease.  Some days, putting on a bra is simply out of the question.  My hubby thinks I just don't like to wear them, the truth is that some days it really hurts to put it on.  I have had sock issues as well.  With all the body parts that like to swell, tighter socks can cause problems.  I have resorted to loose fitting anklets that are easier to put on and off which, of course, limits my choices of stylish socks.  Nylons are out of the question.  Shoes are questionable as well.  I still haven't found a pair that suits all my needs, instead I have a pair that fits for comfort but not exactly work appropriate (thank Goodness my boss understands what is happening with me and is allowing me to wear them).  Feeling as yucky as I am today, it makes me realize how really bad it was last summer.  I was in a lot of denial when I was feeling my worst - I just kept thinking it would go away and pushed through the pain.  At the time, I thought I was being positive but looking back, I was way worse off than I am now.  Even though I am still in pain, I am making it work and taking my mind off of it.  It gets worse if I dwell on it so I often try to do other things to take my mind off it. 

Rare Disease Day - Feb. 29th

I have decided to share information about my disease on Feb. 29th which is Rare Disease Day.  I have been going back and forth about telling people about it as I don't want to come across as trying to make people feel sorry for me.  However I do want them to have an understanding of why I have to limit what I do and that it is a legitimate disease. 

Physically I am doing well today, but mentally not so much.  I am feeling a bit depressed.  Hubby still isn't feeling well and I don't know how to fix him.  I, in turn, am feeling like I am not doing enough and maybe he is sick because I haven't been keeping the house as clean as he needs it to be.  I suppose it could be due to lack of sleep.  Haven't been sleeping well since hubby has been sick.  However, I have been having more energy than in the past.  I have a show next weekend and I am going to see if I can handle it by myself.   As far as the nightshade veggies go, I have been keeping away from them and it is helping. 

Staying positive

I haven't posted lately as I have been feeling quite good and have been keeping busy, however that trend came to a halt yesterday.  I knew that the extra long day of conferences would cause issues for me but I took it in stride and  tried to stay  positive.  When I finished last night, my feet were throbbing.  I really didn't think I was going to be able to sleep as the toe that had been acting up a few months ago, started to ache again but surprisingly I did sleep.  My feet felt like a cartoon - you know, when the appendage gets hit by a hammer and it turns red and gets big, small, big, small - I had trouble trying to relax because of the throbbing.  Thank God I only have to be at school for a half day today as I don't think I could make it a full day. 

I really need to blog more when I am feeling good.  So many times I just write when I have issues but then when I re-read it later, it looks like I have way more bad days than good and I really don't think that is right.  Since the last med change, things have been working quite well.  I haven't been as stiff in the morning;  the pain has been tolerable and not effecting my life as much;  even the fatigue has been better lately.  I realize that it is so very important to remember the good times - if we focus on the bad days, we forget the good and all it does is negate our lives.  From now on, I will be sure to blog on the good days as well.  Meanwhile, I need to get some more sleep. . .

Testing the tomato theory

Well, this week, my hands have been feeling great.  The change in medicine levels seem to have made a huge difference.  I have been trying to pay off the medical bills before they get outrageous so I am living on an extreme budget the next few months until I get everything back in order.  This in turn means that I need to eat food from the pantry and use up what we have before buying more.  Before I started researching more about PsA and what others were discovering about it, I thought I would try some new whole wheat canned pasta with meatballs so I bought a few then later realized I should not be eating tomato sauce.  Needless to say, it has been in the cup board for a couple months while I started experimenting with my diet.  Since the pain levels have been low this week, and I knew I would be home this weekend, I thought I would conduct an experiment.  I ate the pasta for dinner last night to see what would happen.  But no surprise, I was more stiff this morning, probably a 5 on my stiffness scale, however, my hands loosened up rather quickly.  It has been 3 hours since I got up and I am typing quite well.  The left hand is now fine but the right is still a little stiff and can only close to about a 1/2 inch gap.  As I said, I wasn't surprised that it was worse this morning but I am surprised that it isn't nearly as bad as I would have thought. 

This week the weather has been changing quite a bit and I do think it plays a part in pain management.  We got some snow yesterday but the effect was rather minimal.  This summer I plan to work on experimenting more with gluten and possibly dairy.  Speaking of dairy, I have a milk allergy (actual allergy, not just a sensitivity) as well as being lactose intolerant.  Milk and milk products make me physically sick if I eat too much and will act as a depressant as well.  However, since I have cut out the nightshades, I seem to be handling the milk products better.  This honestly, makes no sense to me but if it works, it works.  I will experiment more on this over the summer time when I have less responsibility and can afford to not feel the best. 

At this time - February 2012 - I have confirmed the following are triggers for my PsA:

Stress (probably the hottest trigger)
Potatoes
Tomatoes
Some aspects of weather

Well it is Friday and I have managed to sleep normally the whole week!  I admit, I have had a bit of caffiene help but no naps since last weekend!  I keep staring at my fingers because I can see my knuckles - I haven't seen them this thin in months.  My pinkys which have been slightly deformed as of late (crooked), are looking quite normal and the finger on my right hand that has the slight deformity from joint damage is even looking somewhat normal.  This mornings stiffness is a .5!  My left hand can close fully and my right hand can close to a quarter of an inch which is really good! 

I have managed to keep away from potatoes and tomatoes for another week as well.  Found out some other things that I need to try to avoid as well and will add them as time goes along again.  What I really need to do though, is to get some exercise.  I plan to ride my bike when it gets warmer but meanwhile, I am still trying to see how much activity I can handle without over doing it.  Since the meds change last week, I seem to have more energy.  Well, I have to get to work now so hopefully today will go as well as the rest of the week.

guilt

I am feeling quite well today, only a bit of swelling in my right foot.  However, I am feeling rather guilty about some things.  My sister has been battling two types of Leukemia and up until last November, I would have done anything to help her but now since the PsA diagnosis, I cannot and it is killing me.  She says she understands and does not want me to donate bone marrow as she feels it would be detrimental to my health.  I also certainly don't want to take the chance of giving her this disease as it would not improve her quality of life and would most likely lead to many other problems for her.  What is rather disturbing and weird is that the medial people she has spoken with seem to think I should be able to donate bone marrow and it would not be a problem but yet no one has explained why.  I am fighting with myself as my heart would do anything for my family but my head is saying it isn't a good thing for either of us.  I am sure this is going to cause me to stress out and flare but I am really struggling with this.  I feel as if I am being selfish and I should do whatever I can to help.  I did tell her that if she cannot find a suitable donor from our family that is willing and able to donate, I would do it for her but I so badly want to help that this guilt feeling is taking over.  Physically, my brother and sister would be more able to do it as well since they are more fit than myself.  My husband is very concerned as well as he has health issues and I am trying to get myself in order so that I can take care of him when he needs me.  I am sure he is afraid something will happen to me and I would end up sicker that I already am. 

I am so used to having tons of stress in my life that when I don't, I feel as if something is going to happen soon to get it in an uproar again.  My jobs have always been high stress, my family history is full of trying situations, to the point that people wonder how we survived and stayed positive about it.  My sister and I were discussing last night all of the things our family has endured and how people react when they hear our family history.  On many occasions I have been told how strong my family must be but the truth is, when these things happen, you just have to deal with it, you have no other choice.  We have always been fighters and have managed to be there for each other even though we live in different parts of the country.  Like everyone else, we have our moments of discord but we usually work through it and are there for each other if we need it.  Just like we will get through all this too.  I really do wish I could do more to help but I guess my position in this situation is to be an ear to vent to and support my sister as much as I can.  I think I need to take up meditation and yoga . . .

PsA and the radio

Hands are feeling great this morning - the Psoriasis on the scalp and behind the ear are almost clear.  The only issues today are the toes.  In the night, I couldn't feel my left foot big toe at all.  The right foot toes are like pins but not severely.  Sleep, however, was not easy to get last night so I think my eyes will be droopy most of the day.  Yesterday,  I had a very limited amount of salsa to see if it had any effect and so far so good.  The increase in meds seems to be helping a lot.  Swelling is down (except for the one sausage toe on my right foot). 

I was listening to the radio yesterday and two stations were encroaching on the same channel.  It kind of reminded me of how I feel with PsA.  I was trying to listen and comprehend one station but the other kept butting in, forcing me to hear it as well.  The two messages fighting each other made it difficult to just focus on one and resulted in me getting the two confused and irritated.  My PsA kind of works like that.  I try to concentrate on what I need to do but the pain, fatigue and discomfort act against my concentration, butting in and forcing me to deal with it, making it difficult to finish my task.  I, in turn, get irritated and upset that I am struggling. But I have to keep my wits about me and keep my patience in check.  I am in control, not my PsA.  It is like an enemy that sneaks in and takes control of my body when I least expect it.  But I am the one in control and my meds are my super power that makes me become the superhero and regain control.  The meds are a pain and expensive, but when they do their job, they are a God send. 

I haven't written in a few days.  Last Thursday, I awoke to find my three middle toes of my right foot had swollen and seemingly disconnected from the main part of my foot.  The swelling happened in the joint that connects the toes to my foot thus leaving my toe joints out of place.  I had a lot of trouble walking on Thursday and even called in sick to work.  I made an appt. with my rheumy for Friday and he upped my meds.  Over all, the meds are working, swelling is down and joint count is down (15 painful joints as of Friday).  My elbow has full range of motion again and pain levels are down.  This morning my hands are a little stiff (3) and I am still feeling some discomfort in my toes but better than last week.  Food wise, I did have bar b que chicken pizza this weekend  and a handful of potato chips - however no adverse reactions except for some gas.

The good that came out of this is that my boss now knows a bit more about my situation.  He knows how unpredictable it is and I did tell him how much I have adjusted my teaching so that I can still be a productive member of the team.  He knows I cannot move around the room as in the past and that I am trying my best.  However, I know I am not as productive as I used to be.  We devised a back up plan in case I have another bad morning as I did last week.  I informed him that I am taking precautions, that I started an insurance policy specifically for this situation in case I have to take a leave of absence.   Hopefully I won't have to but this way I will be covered if I do.  It would also give me time to prepare for disability, if I need to in the future.  Right now, I am far away from that but when ever I have a surprise pain, it reminds me how quickly things can change with this disease. 

Thought I was doing things right and doing everything I could to keep this disease at bay and then I got up this morning.  Reality decided to remind me that I have a chronic illness and that I can never let my guard down because it can and will hit at any time.  I went to get up this morning and couldn't put any pressure on my right toes.  Ended up calling in sick to work and having to explain to my boss.  I'm going to go see the rheumy tomorrow to see what is happening. 

Today marks the first day I missed work due to PsA.  Today also is the first day that I realized this thing is going to get worse.  I used the cane due to PsA for the first time today as well.  So glad we have the handicapped hangie because it surely came in handy.  It is amazing how one small portion of your body can dictate how your entire day will be.  I stayed in bed most of the day and tried to figure out what to do.  Now I am debating what to tell the students tomorrow.  I don't want them to worry about me but it will be obvious to know something is happening when I come in with a cane.  Still feel I am going through this for a reason, hopefully I will discover the reason and do God's will.  Meanwhile, I will stay positive and not allow this to bring me down.

Analogy

I thought of an analogy for how I am feeling today.  Picture a ship on the ocean that suddenly capsizes.  Every person on the ship is now trying to swim to the safety of the neighboring island.  Everyone around them is swimming and getting to the island in record time.  Our swimmer starts to swim but is quickly feeling the strain, instead of swimming in water, they seem to be swimming in mud, quicksand if you will.  Despite their efforts, they make little or no progress only tiring them out.  Our swimmer now realizes that most of the people have made it to the island, all though they are trying to encourage our swimmer and telling them to 'not give up', 'work thru the pain', and 'stick it out' the encouragement is not helping.  The few that are left in the water soon fatigue and are slipping under the waves, cramping and hurting.  Quickly,  our swimmer realizes they have to slow down and focus on retaining their energy in hopes that help will soon arrive before they, too, slip under the waves. 

Lately, I feel like our swimmer.  Not slipping under the waves but floating on the surface waiting for help to arrive.  Whenever I try to take things on and do my best, I wind up having to 'float' a while so that I don't overdue it and 'sink'.  I feel like I am buying time until a cure is found.  Since my joints won't get better on their own, I am trying to keep them from getting worse until a fix is found.  Kind of like a limbo for ligaments.  The pain level is tolerable so I keep things the same since I know I can deal with it, hoping they don't get worse but knowing deep down inside that it probably will get worse before it gets better. 

For now, all I can really do is take my time, rest, keep moving, take my meds and focus on the positive.  I will just have to make sure my swim suit is on and practice holding my breath.  After all, I am pretty good at the back float. . .