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.