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. . . 

Finding that balance. . . haven't found it yet

Had some potatoes yesterday and awoke in the night a lot stiffer than usual.  Fingers are swollen and legs are tight this morning.  The usual feet situation (numb and hurting at the same time) but the wrist is still swollen.

Yesterday, I was feeling pretty good so I made the rounds to the local grocery stores for the double and triple coupon deals.  I got some great deals amounting to paying around $30 and saving some $50 more.  As meds increase, bargain shopping is becoming more important.  Anyway, I made these stops on my way home thinking if I could just get them done, I would have time to relax when I got home.  Well, this morning, I am having the worst time waking up.  I think I may have over done it.  I woke up in the night with really stiff legs but was able to go back to sleep. 

Finding that 'happy balance' of moving but not overexerting your self is very hard to find.  The only way I can figure it out, is to discover my limitations and that means to overexert myself at times.  There will be certain days that I will have to tire myself out weather I like it or not.  My jobs requires me to have two concerts per year and those two days totally mess me up.  A two hour rehearsal happens the day of the concert as well and my feet are so messed up by the end of the day that I have had to take the next day off  quite often.  There is no way around it right now, I have to do it if I want to keep my job and the location principal will not allow me to have rehearsals the day prior.  I haven't complained as I haven't fully told them the extent of my arthritis and am afraid it may lead to my dismissal and I am not ready for that yet. 

That elusive middle ground will continue to be my goal and only time will tell.  I am sure it will change and I will have to discover it all over again, but for now, I will continue my quest.  It is all a part of this disease and what we have to do to survive it.

Better this morning . . .

This morning brings a new day and hopefully a better attitude.  I broke down and got some comfort food yesterday and surprisingly, it helped and didn't make things worse.  I am lactose intolerant and allergic to milk so ice cream is not a weekly treat.  It is more like  twice a year treat on a weekend when I don't have to be anywhere so if I do get sick, it wont be an inconvience to anyone but me.  Maybe my body was just completely 'out of whack' and I was craving dairy.  It usually acts as a depressant as well and I stay away from it as much as possible but since I was already in such a nasty mood, I didn't think it would make things any worse than they already were so I broke down and got a pint of twix ice cream.  The comfort food did its job and didn't cause me much discomfort. 

So, for the pain count, hands about 3, right wrist is acting up so about a 5, pads of feet almost completely void of feeling but cramping quite a bit, toes are numb but hurt a lot when they are cramping (7), and finally neck is rather stiff this morning as well.  Right hand is still swollen but yesterday I started crocheting because I had to do something.  The pointer finger on the right hand seems to be twisting more at the first joint and has pain shooting through it when I am using it so I think the joint is being damaged further.  I never looked at my hands as much as I do now.  I really have taken them for granted and never paid much attention to how they look.  Now I wonder how much of this has been this way a long time I just didn't notice it or if they are changing faster than before.  I think I will take some pics on my webcam so that I have a reference point to refer back to compare. 

????

Not sure what is happening today.  I have been on the verge of tears or flat out crying for 2 days now.  I have been trying to figure out why I am so depressed but can't figure anything out.  Yes, I have been hurting, not constant, but enough that I can't seem to get comfortable.  I let out some frustration last night on a customer service rep that didn't really deserve it but I think I finally got them to stop my service.  Meanwhile, I scared myself and my husband at all the frustration that came out of me.  Maybe I am not dealing with things as well as I would like to think.  Oops, here come the tears again.  I am trying so hard to be strong and positive but I am failing miserably.  Maybe it is hormones, but I don't even want to be around me right now.  I feel like everyone is attacking me personally.  Thanks, but I put myself down enough, I don't need everyone else doing it as well.  Didn't sleep well last night nor the night before but my mind just isn't slowing down and I am so frustrated about everything.  I got wonderful news this week but it didn't stop the decent into depression hell.  I am worried about everything under the sun.  Poor hubby is being supportive but is afraid to say anything to me because I am jumping at everything.  He is a saint for putting up with me.

TGIF

Good news!  My sister went home from the hospital yesterday!!  However, that is not why I missed writing my blog.  My hands have been acting up.  I stopped playing guitar and have the students leading each other but the pain is still here.  I limited my typing but the pain is still here.   Driving home, I had pains shooting randomly through my hand and my wrist swelled up.

The timing of the good news was well needed.  I have been feeling like I am slipping into a depression this week.  I have been trying to be positive and I know my pain isn't as bad as others but it is pain, none the less. I have been thinking about the future way too much lately and that tends to bring me down.  I am trying to look at the changes as a challenge and I am trying to plan ahead however the thought is rather overwhelming.
If I can help others, then maybe I can find a positive outreach and a way to make the disease more palpable.

Ideas have been running through my mind about things I could invent to help others with this disease.  There is just so many ways that it effects ones life.  How one day you are moving great and then the next, you can't do things that we take for granted everyday.  Today, driving hurt so my mind was thinking of things I could do to help me be able to turn the steering wheel a little easier.   Carrying groceries was also a pain because those plastic bags, when too heavy, rip into my wrists and make my bones feel like they were coming out of place.  Taking fewer bags at a time doesn't help that much because then my legs hurt from taking so many trips to the car.  So I guess the best answer would be to use a fold up cart with a basket on it and put the bags in it, pulling it into the house, but that can be rough on the hands as well.  I have already modified shopping by unloading the car to the steps; climbing the steps; and then taking the bags into the house - thus having to go up the stairs once as opposed to numerous times (the porch only has 4 steps but sometimes it feels like 100). 

Maybe my future career will be writing a book about all the modifications we can do to make our lives less painful.  Or maybe I will become a famous speaker who travels the country talking about Psoriatic Arthritis and how to deal with life changes, pain management, or everything else we deal with on a daily basis.  Oprah could see me speak and offer me a TV show, where I could take rest breaks as needed and not have to follow a rigid schedule - make millions from working two hours a day!! 

As you can see, my imagination hasn't been effected by the disease.

mini blog

Right hand is quite swollen this morning.  I think I am subconsciously upset about something but I don't really know what.  My toes on my left foot are completely numb and I am concerned it is going to effect my walking today.  Hubby and I decided to get one of those shower seats - we would both benefit from it so I think we will get one this weekend.  Didn't sleep well last night and having trouble waking up today.  Hands are hurting (I'm sure due in part to guitars) but the shooting pain that runs through it on occasion is new, my right elbow swelled up yesterday and my neck is still stiff.  I'm not sure if it is related, but my eyes are very dry this morning too.

I'm too tired to write anything inspirational this morning so I guess this will have to do:  I honestly hope y'all have a wonderful day.

The return of water class

Hands are a 2 this morning however feet are about a 4.  Lots of numbness and nerve pain.  Had some tomato sauce  on pizza yesterday but doesn't seem to be effecting anything.

Water class started last night and I didn't go.  It is one of my favorite things to do and I have many friends there but I am concerned that my hands wont be able to get me out of the pool.  It would be a lot different if they had a normal set of stairs in and out but they only have the ladder built into the side.  Last season, I had a very embarassing experience when the stair broke (prior to class) and I could not get out of the pool by myself.  People came together and helped me yet it was very painful and embarassing.  I know I will feel guilty if the class doesn't have enough people to run, but why should I pay the big bucks if I am not going to be able to use it?  I am hoping that since the Y has started to use the facilities, they will make accomodations for people with health concerns but I am not holding my breath.  I think I may call and ask if it would be a possibility since I know a lot of seniors have taken the class in the past and I think it would be a lot more accessible if they were to do that. 

Swelling up again

Despite watching my diet and trying not to get stressed, I am swelling up anyway :(  My pinkys on both hands are swollen as well as my right hand pointer finger.  Neither hand can close this morning.  Knuckles on the right hand are swollen as well.  The weather is goofy right now so that may be playing a part.  Overnight, we had a thunderstorm/ice storm that will turn to snow later today.  Still have just a bit of psoriasis behind my right ear and the dry patch on my scalp but I did notice some dryness in my left ear yesterday.  Feet are still numb. 

Thinking positive is getting harder to do.  I know if I let it get to me, it could actually make things worse health wise.  I have to keep my chin up and look at things as a challenge - a puzzle to figure out.  If I can keep things in perspective and find answers I may be able to help myself and others.  My water aerobics class starts up again tonight but financially I can't afford it this session.  After crunching numbers trying to find out how I can swing it, I have realized it is not possible right now.  The more I write today, the worse I feel so I think I had better stop now.  Have a great day.

Sometimes the pain doesn't make sense.

Sundays usually are a 'sleep in and get caught up on rest' day, however today was a bit different.  I woke up in the night with really bad heartburn.  After getting up and taking care of it, I realized I was stiffer than I had been in a couple months.  Probably a 5 on my stiffness scale, but my hands were stiff and swollen, along with the rest of my body.  Knees were creaking, feet were sore, hands hurt, pretty much my entire body.  The weather is the same as yesterday so I don't really think that had anything to do with it - I did have a small handful of potato chips yesterday - and I am under a little stress from trying to figure out expenses (our prescription insurance went up the beginning of the year and is causing issues) - but really I didn't expect any of these things to effect me this much. 

Surprisingly, I did go back to sleep and didn't get up until 9 am.  Sometimes the pain just doesn't follow any rules.  You may feel fine one day and then barely move the next.  I still have so much to learn about this thing.  I am actively looking for patterns but nothing has totally stood out except for the nightshade veggie thing.  My brain must be a bit cloudy today since I think I have now typed the word 'thing' a few too many times in this blog. 

The key to feeling better is to keep moving.  Stiff or not, I have to walk and just move in general.  Sometimes that is easier said than done but lucky for me, my water aerobics class is starting up again this week.  But with the finances a bit goofy, I am not sure if I am going to be able to go this round.  I just don't have the answers right now and maybe that is subconsciously effecting my health status.  Live and learn - it will all be worked out somehow but until then I just have to keep my chin up and do my best to make it through.

The future and it's secrets

Hands are about a 3 this morning.  I'm not super surprised since my lunch yesterday was pizza (provided by the school) with tomato sauce.  My feet are hurting quite a bit, left foot achilles tendon is very tight.  Stress levels are a bit better as I no longer am feeling guilty that I don't feel comfortable being a donor for my sisters bone marrow transplant - she was told yesterday I would not be considered a suitable donor due to the PsA.  I certainly didn't want to give her PsA on top of her Lukemias but was feeling guilty about it.   I would do anything for my family and I told her I would do it if I was her only choice but otherwise I wanted her to have someone else since PsA would comprimise both of our immunity systems.  Even though I know I was doing the right thing for both of us, I still felt guilty putting stipulations on it. 

 Yesterday, I received a very wonderful compliment from the parent of one of my current students.  Previously, when I had her older child in class, she questioned my methods and did not understand my motivation regarding performance requirements and such.  Quite honestly, we got off on the wrong foot.  I explained my request and explained how it would be important for her child to learn how to perform in front of people in this ever expanding world.  I explained how finding a way to cope with performing/speaking in front of others was a skill that is much needed in the world now and would become even more important in the future.  My teaching style is different from every other music educator that I know and I  try very hard to help each child find their niche in the Music world and help them to be successful in that area.  I take my job very seriously and feel I have been very instrumental in helping students find their talents and give them the support needed to pursue those talents.  This parent now has a second child going through my program and is loving every minute of it.  The older child continues to stop in and see me when he is in the building and is still involved in music.  Normally, finding out this information would make me feel good but this week, not so much. 

You see, I have been realizing how quickly life can change due to PsA, or any health situation.  I have had to modify my curriculum so much this year that I am afraid the students are not going to get as much out of my class as they have in the past.  I even went so far as to add a short term disability insurance as  a percaution.  My hand issues have left me not able to play guitar very much.  For so many of my students, the guitar section is the pinnacle of their Music experience.  I can't stop having this section in Music because it is so well loved and combines every thing they have learned since Pre-K.  It is the culmination of their Music experience wrapped up in one thing they can do for the rest of their life.  I don't know how much more I can modify and still keep the quality parents and children have come to expect.  My strongest asset in my teaching is that I am somehow able to help kids who have not liked Music in the past, find something that is special to them.  I encourage them and I help them be successful with their experience and believe in themselves.  It really scares me and makes me, that they may not get this special experience any more and I, in turn,  feel inadequate.  I get tired so easily that it takes me a few days to recuperate after a concert.  This is so frustrating, on one hand, I really want to keep doing my job, I love it and I make a difference to a lot of students, on the other hand, I don't know if my body can handle it.  I do not want to get to the point that I become bedridden and have to rely on others to do everything but yet I am afraid if I keep working at the pace I currently do, just that may happen. 

I have been trying to stay so positive about things and not get too scared about the future but this genuinely scares me and is my top concern right now.  I have been trying to think of what I could do if things don't work out at school.  The dream job would be project based, where I can work from home and be able to take breaks as needed.  Something where I could use my creativity and help others.  Probably not requiring me to sing every day as that is super tiring and people don't realize how much energy it takes out of you.  Something where I could make as much money as I do now but is quite a bit more flexible regarding my body.  I am learning how to pace myself, I am paying closer attention to my body and learning to read its rhythms.  I am great at public speaking, maybe I should try to get on the lecture circut and talk about PsA and its effects on ones life.  Only God knows what I am to do now and I guess I will have to wait and watch to see what he wants me to do.  Meanwhile, I am going to continue to be the best teacher I can and hope to continue my life's work helping children to realize their potential and believe in themselves.

ZZzzzzzz

Hands are a 2 this morning which is rather surprising since I did have some potatoes last night.  I woke up at about 4 this morning with some toe pains but nothing too horrible and it wasn't the toe that caused me grief last month.  The stress issues have resided a bit and the flare I got yesterday seems to be much better today, however, we are supposed to get tons of snow today so I have a feeling, I will be coming home from work sore. 

The pressure of the last entry  has subsided slightly.  The stress made me go looking for my comfort food yesterday so I got some french fries, I did hesitate thinking I may regret it today, but since the weekend was coming and I was going to be in meetings all day, I decided to go for it.  I am still so tired that I am having trouble typing this morning.  I'm looking forward to the weekend when I can catch up on the sleep issue and the large amounts of snow we are supposed to receive today, will keep me from going out too much this weekend.

Feeling the pressure

I got some news yesterday that put me in a rough spot.  My head says one thing but my heart says another.  The turmoil between the two has put me under stress and caused me to not sleep well last night.   I really should call in sick but I have a big meeting tomorrow that I have to plan for and can't feasibly do it.  My body is already starting to flare and I had pain in the night for the first time in at least two weeks.  I am sure stress is my biggest trigger but stress is something that is out of our control so I guess the key is how you deal with it.  Without getting into too much detail, I am dealing with feelings that I can't change either.  I may be trying to deal with something prematurely but it is captivating my thoughts and not allowing me to relax or focus on other things.  Hubby tried to hold my hand but it hurt - I hate it when I have to ask him to stop doing something I normally love him to do.  Stiffness is about a 4 this morning.

Meanwhile, my hands hurt, my feet hurt and are numb at the same time, my hips hurt, my lower back hurts, my thighs feel like they are swolen, the base of my neck is very stiff and hurting and my eyes are having trouble focusing.  Not my best day.  I didn't have any nightshade veggies since Tuesday and this is must be from the pressure.  It is the days like this that make it hard to stay positive.  I am always afraid I will snap at my students on days that I hurt.  My patience is the first thing to leave when I don't feel well.  No matter how I feel, life still happens and I have to continue going weather I like it or not.  

My experiment with nightshade veggies continues.  I reintroduced some onion tater tots for dinner last night and, just as predicted, I had a slight flare up.  My hips felt like they were swolen and it may be my imagination, but my pants feel tighter this morning.  My left pinky finger has also been acting up and I think it may be starting to have joint damage as it is now crooked.  It has swelled up a little but not sausage fingers yet.  The right wrist is hurting a bit as well so I am thinking I may have to have students lead the guitar playing today.  All though I haven't had my meds yet this morning, so it may all clear up after taking them.

Since I keep reading about everyone who has had to stop work due to their PsA or take a leave.  I figured it wouldn't be a bad idea to check out short term disability insurance.  I plan to work as long as I can but how quickly things changed with my last major flare up, I need to be prepared either way.  I know people who over insure but for once I think I am doing the right thing since the chances are now higher that I may have to take a health leave at some point.  On the other hand, if I prepare for it, it may not happen just because I am prepared. 

So tired. . .

Right hand is about a 2 while left is a .5.   Woke up with slight jaw pain and still have numbness/pain in pads of both feet - more numb than pain.

Woke up at 4 am this morning.  The good news is that I didn't have much pain - bad news, couldn't go back to sleep and now my eyes are drooping.  I have to work today and so I am going to have to load up on caffiene to get through the day.  I am so tired that I am having trouble writing this blog.  The fatigue caused from this disease is the part that I can't seem to get under control.

Talking about this disease - are they really going to understand?

Well, the small amount of potatoes that I had yesterday doesn't seem to have effected anything.  Hands are a bit stiff - maybe a 3 on  my stiffness scale.  Feet are still numb from the ball of the foot through to the toes - however my toes on the right foot seem to have more feeling today yet still have a sausage toe on the right foot.  Yesterday, I was exhausted from the visit.  Saturday, I had energy most of the day - didn't get too tired while cleaning and entertaining company but Sunday, I recuperated from it. 

I have decided that I want people to know what is happening in hopes that they will understand.  My Mom and sister were down from Michigan for a visit this weekend and I used the time to help them understand what is happening with me.  I shared this website and tried to explain what I know so far.  To my surprise, they were very understanding.  In fact, my Mom seems to be the one who is accepting it the best.  My husband on the other hand, has taken quite a while to realize how much pain this disease causes and has acted in the past like I am making things up to get out of housework or avoid his family. . . etc.  We finally had a real heart to heart discussion and now he seems to understand.  Hubby even joined in with the housework on his own this time.  Hopefully this support will continue because I don't have many good friends down here and I don't really have much as far as a support system.   Hubby's family are his support but not so much for me.  None of them know anything about PsA nor are they willing to learn about it.  Meanwhile, Hubby is coming around and realizing how much this is effecting my life.  He is having to take on more responsibilities and accept when I hurt.  I guess I have always taken care of him if he didn't quite feel right and now that I need some help when I hurt, the tables are turned. 

Who am I?? What will happen next??

So I have been off potatoes since last Monday.  With the family visiting this weekend, I decided to make a nice big breakfast.  I made eggs, toast, pancakes, and corned beef hash.  It was all very yummy but I am paying close attention today to see if the potatoes cause me any pain. 

Yesterday, I mentioned how I was going to do my housework a little at a time.  The results are rather mixed.  I managed to get it done by just working for a few minutes and then resting.  Hubby joined in and did his share as well.  When Mom and sister arrived, I still had enough energy to visit with them and go see our other sister.  Our eating situation was quite mixed up and we did not get to eat dinner until about 8 pm - which is really late for us.  I usually take my second round of meds just after dinner (usually around 6 pm) so my meds were quite late.  I had increased pain around 7 pm until bedtime but I really think it was because I hadn't taken my pain pill and it had simply wore off.  Surprisingly I had enough energy that I didn't get tired until about 10 pm.  Today, however, I am tired and will spend most of the day recuperating from the visit.  I decided to have the hash with the potatoes since I do not have to work tomorrow and figured if I reacted to it, I would have some time to get over it. 

We spent our visit talking about our family situation and I gave my Mom and sister information about the disease.  I tried not to dwell on it but I informed them of what I am finding I can do and what I can't.  How I may have to rest more than in the past and assured them that I am going to be as positive as I can regarding the situation.  They were concerned that I may get depressed as I discovered more of the information regarding PsA.  I assured them that I am going to try to look at it as an opportunity to help others become more informed and that the blogging helps me to stay positive. 

Recently, I have realized how much the disease is effecting my job, and honestly, I don't know how much longer I will be able to teach effectively.  I have been weighing my options and trying to discover a way to still make a living but be able to manage my pain and fatigue - but the answers are few.  I have a lot of ideas but no idea how to bring them to fruition.  My mind still works and my creativity hasn't been hampered by the disease however, my ability to make those ideas come to life is fading.  This is probably the most depressing part to me.  I don't have kids so the 'not being able to play with my children' isn't an issue.  My husband has his own issues with movement  so we actually will have that in common now.  I have always been proud of my creativity - that I don't see things like everyone else - that I can see what things can be instead of just what they are.  Now my challenge has become seeing what I can be instead of how I currently feel.  My pain is not who I am.  I am a fun loving, creative, entertaining individual not just a person with PsA.  My disease does not define me as a person.  I define it as a part of my life but not who I am.  I am a wife, musician, educator, creative spirit, faithful, fiber artist, daughter, sister, talented person who just happens to have a disease.

Family visit today :)

My Mom and sister are coming to visit today!!  I am so excited to see them, I miss them greatly and enjoy having them around.   However, that means I have to clean the house to get ready for their visit - not so happy about that.  I decided to do things a bit differently this time and see if it helps.  Usually I rip through it to get it done as fast as I can so I can enjoy doing something else - however, that usually results in me having to rest after I finish because I am tired and hurt so bad.  Most of the time, it doesn't get finished and I have to put it off again to another day.  So today, I am working for 15 or 20 minutes then resting to see if I can get more done and still have some energy left to visit with my company and take them to see our other sister in the hospital.  So far so good.  When I first started this morning, I jumped in and went to town like in the past, however, I ended up not watching what I was doing and I smacked my hand against the steel frame of the bed.  To most people that wouldn't be a big deal but my PsA made my knuckles essentially move  out of joint for a minute and just kills.  For others it would just be a quick ache for a moment and then go away.  For me, the pain lingers and throbs for quite some time until my knuckles swell up and the bumps of the knuckles cannot be seen anymore.  Then the swelling stays for a couple days.  Of course it is my right hand and I am right handed so the left hand has to try to make up for it.  My right hand is the hand with less than 50% of its grip left making cleaning harder to begin with but then when it is swolen, it makes it worse.  Hubby has been great and helping me this morning.  He isn't feeling the best himself but he is trying and I love him even more for realizing I hurt and wanting to help out.   I would say we are over half way done and only my hand is hurting right now.  Normally, my back would be killing me at this point and that would be when I have to stop so I think how I am dividing it up may be helping.  I still plan to take a nap before their arrival but I think I will enjoy their visit more by being able to move.

quick blog

Just a quick blog this morning - have to get my car out of the snow.  Fingers are about a 1 - left hand isn't even stiff but right is a bit.  The snow made me hurt more than usual yesterday but this morning, I don't hurt much at all.  I do have a day full of sitting today so I will have to be sure to move around a bit.  The bottoms of my feet, which have been acting up, seem to have a bit more feeling in them this morning and just the toes are fully numb.  The achilles tendon is tight but not hurting at this moment.  Still managing to stay away from nightshade veggies and it really does seem to be helping.  Psoriasis behind the ear is still there and flaky but not too annoying.  Today is definitely a bad hair day but I am sure that is not from the PsA - lol.

Weather's effects on my PsA

Today is supposed to bring us our first significant snow of the season.  I have managed to be potato and tomato free for 4 days now and symptoms have been improving, however, I woke up with more stiffness and pain this morning than earlier this week.  My hands are stiff (about a 5), my wrists are aching, my achilles tendon is tight and I still have pain in the bottom pads of my feet.  The good news is that my toe hasn't woke me in the night in over a week now.  Even though I have been sleeping better, I still feel very fatigued and as if I am not sleeping enough. 

I have cut back on my crochet since guitars have started.  I am using my hands so much more lately that I am afraid I may over do it. I can tell I am tired because my writing isn't as positive as earlier posts have been. 

So the snow isn't here yet but is supposed to be soon.  Is that why my wrists hurt?  Does the air pressure effect the joints?  Yes, it does, however I am not sure if what I am feeling is because of  over use or the weather.  I guess I will have to wait and  decide later when I have more experience.  I have decided I will no longer wish the day away.  When I was in pain before, I found myself hoping for the day to go by quickly so I could rest.  I realized I was wishing my life away and not enjoying it.  So I have decided to change my wish - I will now wish for a pleasant distraction from the pain.  Meanwhile, I will just keep plugging along day by day doing the best I can.  

So far, so good

Day four of cutting out potatoes and tomatoes - No stiffness this morning at all!  By the end of the school day, my back had stiffened quite a bit and the pads of my feet still feel some pain but over all, quite a good feeling day.  I am thinking the foods do make a difference.  All though the week started with more stress than usual, I have not flaired yet.  We have family visiting this weekend and I am looking forward to our company :)  Maybe that is helping me - having something else to focus on and preparing for the visit.  I have already told them not to expect a perfect house or anything like that so I am not allowing myself to stress over the housework.  We'll see if this continues :)

Living life Day by Day

Actually written January 9th but not posted until the 10th -


So I actually got a good nights sleep last night - it has been a while.  Yesterday I paid close attention to what I ate, no potatoes nor tomatoes which seem to slip into my diet on an endless basis.  Since these two items make up a good share of my caloric income, I figured they should be my first items to test.  So far today, I woke up with a little stiffness - I would give it a 2 on the stiffness scale in my mind - and it was gone by the time I drove to work.  Even though I got decent sleep, I am still finding myself feeling really tired.  Thank goodness, I have some little breaks built into my day.  Even a 10 minute sit down to clear my mind for a moment is better than just plowing through.    This week does have a lot of meetings though and my day will last longer than usual so I had better try to get breaks in when I can.

Third marking period is when I have students jump into instruments and requires my hands to be going at all times.  Guitars were first this morning, and my hands did quite well.  Left hand moving pretty good, but then again that is the hand that still has a pretty good range of motion and hasn't been hurting.  Right hand ended up doing quite well, too.  Recorders for the rest of the day.  So far, no major headache from it but we'll see how the rest of the day goes.  The fingers seem  to be working ok for recorders, too, well today at least.

It was two years ago that I had to go for my first cortisone shot in my right hand.  Guitar time had made it act up enough that the pain wouldn't go away.  I didn't know then about the PsA and just thought I had over used it or something.  Last year during this time was when the right hand started to go numb but have pain at the same time.  When the pain and numbness continued into the summer (had started in January) and the knuckles started changing colors, my GP realized there was something more going on and the tests began.  First it was to a specialist for a carpal tunnel test.  Results were yes, there is just a bit of CT issues but not enough to be causing this much inflammation and numbness.  More tests were done with no results.   Next stop was the Rhumatologist but I had to wait until October to get in to see him.   Even more tests happened this time, including x-rays and blood tests.  My brain was seeing dollar signs adding up with each visit but my body was saying keep going - we need to find relief from the pain.

Quite honestly, this instrument time is what some of the students look forward to all year.  For me, it is the time of the year I really enjoy but also take day by day since I don't know how my hands are going to feel from one minute to another.  I am still learning so much about this disease that I still don't know what or when to expect anything thus leaving me to take living one day at a time.  I am worried about how I am going to be able to plan things or do any shows because I don't know if I will be able to.  By my contract I have to do a show for each grade level and lucky for me they are at two different times of the year.  The first show this year left me hurting so badly that I had to take the following day off  (and then the weekend) just to recouperate enough to get back in my normal routine again.

I understand that I am still quite early in my diseases progression, but I plan to be here for these kids as long as I can.  I also realize that as meds increase, my immunity will decrease and being in the public school system may not help my situation.  For now, I will live life day by day and take things as they come.  I will enjoy the time I am spending with my students and encourage them to be the best they can be by being the best I can be.  That may mean I vent on my blog at times and may even come across cranky to you all on here but to my students I will be strong and take each day one day at a time.

More stress so I guess I will expect a flare soon?

Day three of no nightshade veggies and I awoke to no pain and just a bit of stiffness this morning!!  Yay!!  However when I checked my facebook, I found out a few things that brought on some anxiety.   Of course it is nothing that I have any control over and there is nothing I can do to help the situation.  I hate having that helpless feeling.  In some ways, I guess I should thank stress because if it wasn't for stress, I wouldn't have gotten my huge flare last summer and the doctors would still be thinking I was a hypochondriac and I would be questioning my sanity.  In some strange cosmic way, I owe my diagnosis to stress.
I have always told people to 'let go and let God' but when it is time for me to follow this same advice, I have trouble following it.  I have learned to hope for the best but prepare for the worst - my Mom has told me this for as long as I can remember.  Last night when I was talking to my Mom on the phone she retracted her lifelong belief and changed the phrase.  She knows me sooo well.  She knows I would do the prepare part and then over analyze myself and dwell on it.  With everything we are dealing with right now, with my sisters illness and chemotherapy, she dropped off the end section so now her saying is just 'hope for the best' or even 'pray for the best'.  In other words, focus on the best and do not dwell on the worst which is what I sometimes end up doing.  She is a very strong woman who has lived through more trials than anyone I know.  I hope that I inherited that strength and her faith in God.  She has been through the death of her husband, her child, her parents, and extreme life changes that would hinder a normal person but she has made it through with a smile on her face and a song in her heart.
This blog has become a way for me to keep track of things but also to start my day on a positive note.  I think the hardest part of dealing with this disease is keeping a positive outlook and not allowing myself to slip into depression.  I know that is easier said than done but I need to do this for me and I need to keep my outlook positive.

The New Year begins. . .

In November I was diagnosed and have spent the time since trying to understand what exactly Psoriatic Arthritis is.  Having never heard of it prior to last year, I really had no idea what to expect or if I could do anything about it.  Following the Doctors orders, I started taking the meds and trying to find out more about the situation. 

I know no one who has this disease and the only thing my family and friends know about it is the infamous phrase "Doesn't that one golfer have it?" 

I have decided I am going to research it and talk to others with it to find out what works for them and how I can attempt to control it.  This blog is my attempt to keep track of triggers and helps that work for me.  I have dedicated this year to experiment with foods, stress relievers and anything else that may help me deal with the pain because as the name of the blog says, I haven't got time for the PAIN because my life isn't going to stop for it.


My job isn't going to stop just because I am tired or am hurting.  My students still need to learn and look to me to inspire them to do their best.  Weather I like it or not, I am a role model for some of them and I can't let my situation damper their enthusiasm for Music.  I am determined to find ways to keep myself mobile and continue to live my life the best I can. 

I have to be positive in these opening blogs because I know things could very well get worse.  Last summer when I was hurting the most, and didn't know what was happening, I wasn't very positive.  I thought my friends and family didn't believe me and thought I was making things up.  The thought occurred to me that my doctor and everyone thought I was being a hypochondriac.  Health history in my family is full of bad stuff so when I don't feel well, I automatically think about the family members I have lost and their struggles with their health.  My symptoms didn't match any of theirs - Diabetes, Heart trouble, Cancer - but this was different.  Even though those things are terrible, their symptoms were not like what I was experiencing.  I am tested yearly for all of those things and none of them were my situation.  I was in pain.  Pain that I couldn't seem to control.  Pain that made no sense - like parts of my body were numb but yet there were pain in these areas. 
The pain could move too, one day it would be in my feet, the next it was in my hands.  I lost feeling in my toes and my fingers yet my fingers and feet were warm to the touch and there was no signs of circulation issues.  My lower back has been an issue for quite some time.  I thought that was due to stress so I started getting massages every two weeks to help with that.  It feels great and helps tons but the lower back issues were still there.  I started dropping things and had no grip in my right hand.  In fact, I couldn't even close it into a fist.  My fingers and toes would swell up.  I even had to have my heirloom wedding ring cut from my finger before it cut off circulation.  Then the discoloration began.

Up until this point, I really didn't think my doctor believed me.  He had been a wonderful doctor to my husband who has his own health issues.  My husband has Cerebral Paulsey and has been dealing with pain and ambulatory issues his entire life.  So many times, I have symptoms but then when I get to see the doctor, they cannot find it or explain it away.  When I came in with purple/blue knuckles, he realized the problem was bigger than he could explain.  He decided to set up a series of tests and send me to a rhumatologist for further examination. 

When I met with rhumatologist the pieces started to make sense.  He asked me if I had ever had any psoriasis.  I thought "what the heck does that have to do with anything??"  but I answered, "well, I don't think so but I do have some dry skin in my ear."  He took one look at it and realized I did have psoriasis issues - I just thought it was a patch of dry skin, like my father had, in my ear.  Upon further discussion, I found out the dandruff that I was experiencing was psoriasis as well.  We also found out that my toe nail fungus that hadn't gone away with treatments was also a form of psoriasis.  His inclination was that I may have psoriatic arthritis.  He proceeded to tell me some of the symptoms - all of which I have had at some point in the last ten years.  He looked back into my file and found many other symptoms that I had been concerned about that were actually symptoms of the disease.  The tenderness in my achilles tendon, the swelling in my hands and toes, the ever so slight twisting of my pointer finger on my right hand, the fatigue that hits me at times when I feel I shouldn't be tired,  the dry patch of skin that appears whenever bad things are happening or I am taking on too much were all symptoms I had overlooked. 

The moral of the story is . . .  I am not crazy.  I am experiencing things with my body that I do not understand.  I have to learn how to deal with it and how to make my life better.  It may mean that my  comfort foods like potato chips and dip may actually make me feel worse instead of better.  I am going to spend the year trying to find links between foods, stress, and activites and my discomfort.  I will share what I find with my new friends in the support group and those of you who would like to know.  Meanwhile, I am going to enjoy time with my husband and family while I still can.

Here's to the new year - may it be filled with  health, love, friends, family and posterity.