Saturday, October 16, 2010
Living with lupus one must learn that balance is the key. I am quickly learning this. With lupus many of the everyday tasks that others take for granted are monumental efforts to us and in doing them can have repercussions of a new flare kicking in.
Most of us with lupus find this out the hard way. As we push ourselves to continue to try to live a normal life like we used to. This is the new normal. This is the new reality. The sooner we accept and adjust the easier our lives will be.
We learn to appreciate so many things. Getting up and out of bed and into a shower is a major accomplishment for many of us on any given day. Many times by the time its done and we are dressed we are almost ready to head back to bed.
I have learned to find value and a sense of accomplishment in those type of tasks now. They have meaning to me where as to other healthy people its just part of their normal day. To me being able to do them means I am having a good day. I have accomplished something it builds my self esteem and makes me happy. For there have been many days where I could barely get out of bed. Oh how our values and perspectives change when stricken with a chronic illness.
Don't get me wrong I still have many tears and frustrations because I can't do things like I used to. I would not be normal if I did not feel that. Yet, I am learning every day and accepting my new normal a bit more every day.
When I am home in my own little world, it is so much easier to accept. It is when I venture out to a store or a walk in the neighbourhood that I realize how much I have lost. People look at me strangly when I who am only in my 40's and look fine and healthy , stop to push a door opening button to a store. Or when passing through a door someone looks at me as if I should be holding the door for them to go through as well. I can barley get the door open for myself. But they cannot see this.
I am not shy however, if someone be bold enough to say something, I have no qualms to tell them I have lupus, a chronic invisible illness with no cure. Some people look at me like I have two heads and some people actually suddenly become a little sympathetic or caring.
Anyways, today is a pretty good day, my symptoms are manageable and I will enjoy what I can of my day.
Sunday, October 10, 2010
It is generally a super happy time for me. The weather is crisp the way I like it and the leaves are turning colours. It is all good.
However, I often think of my bio sister (M) this time of year, don't ask me why, she treats me like crap. But yet I still let her enter my head, and I can only attribute this to the fact that I have only ever tried to build a relationship with her based on honesty and truth, and always holding out that somehow she would one day wake up and see things as they truly were.
Unfortunately she does not value these morals very much. She has a very skewed view of how things were and how things are.
She has had her issues, Lord knows we all do.
I tried to be there and support her when her marriage was on the rocks , even though at that time I didn't know the deeper reasons. I tried as much as I could , though long distance, to be there for support and encouragement.
There was a spell of time a couple of years in fact where she would be so annoyed at my phone calls, I would be just calling her up to say hi , thinking of you , I never really had anything drop dead important to say ..but like now even ..she would just pop in my head and I would call her to let her know I was thinking of her.
I used to think it weird that this was annoying to her but I would later come to realize this was all probably partly due to the fact that she was dealing with alcohol addiction and eventually became a full on alcoholic.
I would have tried to be there for her through that too but for some reason she has always pushed me away and made me out to be this big bad person. I am after all the older one ( by all of 11 months) the instinctual big sister syndrome kicks in and I just want to be there for her.
Apparently this was not wanted by her and she would push me away and cause disagreements and twist my words and my intentions at every chance she would get to keep me further away.
You would think I would learn but no , every year I would try yet again to open the door and see if maybe her pickled brain would have sobered up and realized that maybe her view on how things are was a might clouded by her alcohol.
But no, she was still as mean and down right cruel at times as she can be. Everyone in my family has kept on saying , leave the door closed , she does not deserve you, you care too much , just let it go.
Of course I would never be able to let that happen. Always hopeful of a change and the years went on.
At one time I had my suspicions of she might happen to actually be a lesbian. I delicately said to her that if her problems were stemming from her sexual orientation that I was okay with this and that I would be there to support her.
Well, she flat out denied that this was the case and I am sure that painted me badly in her eyes yet again. Although a couple of years later she had divorced her husband, declared her lesbianism to her parents and moved in with another woman. So , I say , how bad can I really be.
I am very in tuned to people. I pick up on things.
And she has declared her new ( well I think 6 years) of sobriety over and over and this is a good thing of course. I am sure she was drinking to deal with the fear of coming out . Once she came out she no longer needed to drink.
But again, nothing has changed with us her memories of how she saw it are still her way is right and the truth and my ways are wrong. Except I have always been sober and she has been from her own account quite the drunk, but yet she cannot accept that perhaps during those years she just might have treated me badly .
She often writes on her blog ( which I read and she knows it ) in ways that boggle my mind. Talking of how important relationships are and how great things are...here is a quick clip from her blog "I am thankful for my friends, both online and in 3D. I am thankful to be able to say I have friends I have known for 30+ years and still hold them as close in my heart as I did when we were childhood friends. And, yes, I am thankful for even the bad things that have happened in my life, for if not for those, I would not be where I am today. I am certainly thankful for getting sober and staying sober for all these years. I attribute that to my family and an online community" .I find it so sad that she pitches this in words and yet her own actions say the complete opposite.
She only likes things in the world that go her way and agree with her in the moment of her life. It must be sad to only want relationships with people when they only take your side on issues or ideas and cannot just be themselves and have likes and dislikes as well as be a friend.
I often wonder if she ever truly looks in the mirror and sees who she is and who she has become and how she actually treats people. She can't possibly or she must be totally blind.
I find it funny how her words on her blog talk of kindness and friendships and yet she treats someone who has only ever tried to honestly get to know her and be there for her like shit.
I sent her an email in the spring after coming to terms with my illness and working on getting a handle on what my new life was and one day it occurred to me yet again. That I needed to contact her . I had been so sick for so many years. Seeing so many different doctors each treating each symptom as a problem of its own and never really finding answers. Until last year getting my lupus diagnosis.
And then speaking with others of my biological family and getting a ton of health information that all would have been so much more helpful earlier on. I would have likely had a diagnosis sooner and avoided having had my liver involvement.
Anyways, I emailed her because as mean as she is and as spiteful she is toward me , we are still birth sisters, I still had this big sister syndrome thing where I feel I must do what I can to try to help her or protect her. ( unfortunately she does not feel any thing sisterly toward me) ..
I write her and tell her about my diagnosis, and that I felt she needed to know , as since it was so hard for me to get a diagnosis not having had any family health information for so long. That if by telling her of my issues etc should she ever be at a point in her life where this info might come in handy I wanted her to have it.
Well, first she made me feel like shit for contacting her, how dare I , she has her perfect world now and I intruded upon it.
Then she basically let me know that it was too bad I had lupus but in the grand scheme of her life she really couldn't give a shit.
Well, I have to admit, even though every time I open the door to her she slams it in my face , I juts did not see this coming. My family thinks I am just stupid for not seeing it coming as it is just what she does. I guess , I thought for a moment, she would see the point of what I was trying to do. I was not looking for a relationship, I was not looking for her friendship. I was mearly wanting to give her something that most adoptees would KILL for which is information of any kind on health issues. But no, she saw it as some plot or who knows what in her twisted head.
So once again in talking to both my family members and my birth family members they have all told me over and over again ., she is just a self centred , selfish , bitch. plain and simple.
And try as I have to not allow myself to see this , finally this year it was getting through to me.
I was reading her blog not long ago and she even will write little jabs at me on there, it's almost like she is a bully.
I wonder why she has to be this way.
She who says she grew up in the perfect loving family should be more secure then she acts.
Maybe deep down she has resentment of me , that must be it. But why resent me, I actually had a very abusive home where I went and all I was ever thankful for was in knowing she did not have to go through such a thing.
oh * sigh* I will never figure her out.
But I know who I am , I know the loyal loving caring friend I have been to those in my life, and it is sad that she will never allow herself to get over her issues and find out for herself who I am.
She's missing out on a pretty awesome person, I sleep well at night all the time, I know who I am and very much like who I am and who I have become.
And I am learning to accept that she is not who I thought she was all those years, I have to see her for who she really is and that is the hardest part because I do not like who she really is. I like the idea of she is my baby sister, my blood, my family...but now after all this time I am learning to get rid of the fantasy of who she is and how we could be and see it the way she is and the way it is.
She just doesn't deserve me in her life and I deserve better than to keep trying to make it work all the time. The others in my birth family have moved on very well past her, they saw her ways long ago, and she is basically dead to them, it seems so harsh but yet by doing that they have not allowed her to hurt them time and time again. I need to do the same as they have and put her and the past and all that behind me and move on.
Friday, October 8, 2010
Went back to hospital on Tuesday am and was able to get the IV antibiotics out of my arm although I need to continue them until saturday in pill form.
Went Wednesday as planned to have the broken tooth extracted..and I am happy to report that sucker came out and I had no complications ( insert very happy face here).
Went to my family doc to follow up on some possible kidney issues and discovered the biggest concern was just my very low potassium levels..which doc feels a banana a day and an orange should take care of that..so blood tests will be done later today to get a new reading and then again in 2 weeks..if the bananas and oranges do the trick I am good to go ..if not they will be adding potassium pills to my already huge list of pills ..so this we do not want..
Other than that I am looking forward to a ton of rest this weekend. It is thanks giving weekend here in Canada. We don't have really much planned but we will see a few people over the weekend but the biggest plan is to rest. :)
Saturday, October 2, 2010
I will try to fill you in on what the last week has been like.
I broke a tooth about 2 weeks back. It did not hurt or anything, just half of it was gone and what was left was filling and some tooth. I had planned to leave it be until after october when finances would be in a bit better shape.
Unfortunately last tuesday it decided to cause unimaginable pain and I suffered the entire day and night with no relief. So Wednesday I went to the dentist to have them take a look.
He told me it was in fact infected and because so much of the tooth had broken off it would need to be extracted. The problem was the infection they cannot pull the tooth like that need to clear up the infection first. Should be easy enough one would think. But no, enter here..a person with lupus on not one but 2 strong immunosuppressents as well as many other medications..and a person who is deathly allergic to penicilan .
So he gave me the prescription for a very strong anti biotic given to people with dental issues who cannot take penicilan and off I went.
Should have ended there .......but nope not for me...............
Wednesday night I woke in the night feeling very ill and would head to the bathroom feeling I would be sick to my stomach..I was dizzy at times, I was also having bouts of high temperatures.. this happened a few times and then the one time I still am not sure if I just slumped to the floor from exhaustion or if i passed out but when I woke my face was all numb..
My cheek, jaw, chin and lips ..but only on the left side of my face and of course I still had the excruciating pain from the tooth. I was now wondering had I maybe had a stroke???
Fearing this I woke my hubby and we went to the hospital.
At the hospital they evaluated my condition, also suspecting a possible stroke they did many tests first to determine if this was the case. Thankfully no..they think the numbness is being caused by the infection pressing on a nerve in my jaw.
So many blood tests later and gravol for nausea and Iv of fluids to rehydrate me...they got the results for my blood work showing some concern of my kidney function, which I need to follow up with my other doctors, as well as low potassium levels and very high white blood count obv . from the infection.
The course of action was to start my anti-biotics by IV and hopefully it would be easier on my already compromised system due to the lupus. And to come back on Saturday for re-evaluation.
So, off I went , to the clinic where they set you up with an IV pump that you stay hooked up to with needle in arm and other end attached to this little pump that feeds me the meds over a 24 hour period ..and then go back to the clinic every 24 hours to reload.
Saturday, today , I went back to be re-evaluated..I still have the numbness in my face but the pain has settled some.
It was again decided that the best course of action is to continue with the meds in IV form at home for the next few days and return to the hospital again next tuesday. Hopefully the tooth extraction will then take place next wednesday at the dentist office as planned.
its been a very tiring very draining week. But I am hopefully this will be over soon.
Thanks for checking in on me , always appreiciated.
Monday, September 27, 2010
As I mentioned earlier, this past March I was thrown into a huge flare that affected pretty much every muscle in my body. And left me for weeks struggling to walk. I was unable to do more than get from the bed to the bathroom for the first few days until the medications started to kick in and help.
Then I could get around the house but it took all my will power to do it. Then I gradually worked up to heading outside and the gazebo to sit.
Eventually I started to venture farther and farther and it was like I was this 80 year old woman taking baby steps down the street. I would be so tired I would stop to sit down anywhere.
It was like walking in water up to my neck the resistance was exhausting.
Now I hope, oh man do I hope that I never have that again but I need to be realistic and prepared. I had no signs that it was about to happen. I went to sleep that night feeling nothing more than a bit more tired than usual and whammo !! the next day my life was completely different.
So, I am a member of a great recycling group called freecycle. They are all over canada and the US..it's for people to post offers and wanteds for items they wish to let go of or find. In order mostly to keep them from going to the landfill but also for them to be useful to others.
Well, I have thought a lot about a walker and then yesterday I read an offer on the site for one and the person offering does not live far away. So I sent a reply telling a bit about my reason for interest and if it was still available.
It is always up to the "gifter" to choose who ever they wish to give their items to etc. and always up to the "receiver" to pick up.
Well, I got a reply today that it is still available and that he would love me to come see it today. So as long as it looks like its a good size for me I will likely bring it home. Just being able to hold onto something when I am like that is all that really matters.
So I will head out later today after hubby gets home with the car and hopefully bring it home.
Like I said I really hope I never need it again, but it would be silly of me not to be prepared it is there for if I need it.
The price is right ..as it is from freecycle it is free...no money ever is exchanged..and I was also thinking my mom is older and had back surgery last month. If she ever needed it I can always lend it to her too.
I think for me, learning as much as I can about my illness and learning what may or may not happen and at least understanding and accepting that things can happen is a step in the right direction.
Sunday, September 26, 2010
1. The illness I live with is: Lupus
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: I was around 10 or 11 years old.
4. The biggest adjustment I've had to make is: allowing myself to rest and not feel guilty
5. Most people assume: That its not a very serious illness
6. The hardest part about mornings are: Just getting up and moving
7. My favorite medical TV show is: HOUSE
8. A gadget I couldn't live without is: my computer
9. The hardest part about nights are: wondering what symptoms/challenges I will face the next day
10. Each day I take __ pills & vitamins. (No comments, please) 10 prescription pills/ no vitamins
11. Regarding alternative treatments I: would be interested in yoga, meditation, accupuncture
12. If I had to choose between an invisible illness or visible I would choose: ridiculous question..this is what I have I will deal with it.
13. Regarding working and career: I am not working right now
14. People would be surprised to know: how destructive lupus can be
15. The hardest thing to accept about my new reality has been: adjusting to taking medications every single day
16. Something I never thought I could do with my illness that I did was: haven't figured this one out yet
17. The commercials about my illness: I heard there had been a commercial recently , haven't actually seen one yet.
18. Something I really miss doing since I was diagnosed is: I dunno.
19. It was really hard to have to give up: life as I knew it
20. A new hobby I have taken up since my diagnosis is: haven't yet but would like to learn more card games maybe join a club
21. If I could have one day of feeling normal again I would: spend a day with my boys doing whatever they wanted
22. My illness has taught me: to take care of me, and listen to what my body tells me to do or not do.
23. Want to know a secret? One thing people say that gets under my skin is: it could be worse , because yes it could be, we hope it wont.
24. The harshest moment: Telling my sister I had Lupus and realizing she could care less.
25. The part that makes me happiest: when people are truly supportive.
26. My favorite motto, scripture, quote that gets me through tough times is: don't reject...just accept..its already happened ..now learn to cope.
27. When someone is diagnosed I'd like to tell them: learn as much as you can, take your medications, listen to you body.
28. Something that has surprised me about living with an illness is: I am LIVING with an ilness :)
29. The nicest thing someone did for me when I wasn't feeling well was: just showed they cared and tried to make me feel better
30. I'm involved with Invisible Illness Week because: it's important
31. The fact that you read this list makes me feel: worth while
Got through the usual morning routine, take a pill, have some tea, then breakfast and 4 more pills, shower and dress.
I have noticed the last week or so my hair is again starting to fall out. This is quite common for people with lupus and it can be caused from the lupus itself or from the medications we take to control the lupus , now how does this seem fair? It is a good thing I have never been one to really worry about how I look to others. I am how I am and if I end up being me with no hair at all , oh well then bald it is.
I have a very round head though so it could be quite the sight. I don't let it get me worked up though , as what would that do , probably just make me stressed and cause more hair to fall out.
In all honesty I am more worried about the amount going down the shower drain and possibly clogging it and causing a plumbing bill than being bald. :)
It's a rather chilly , drizzly morning here ( well actually almost noon) ha. It does take me a while to get through the things that most people can get through in a fraction of the time. Most days it is noon by the time I am up , showered and dressed.
It is my new normal since being diagnosed and recouperating from my last flare.
Oh and what a doozy it was , it started a year ago March with joint pain, mouth sores, and then excalated to paralysis of my right arm and hand as well as difficulty swallowing, shoulder pain beyond imagination, muslc weakness , brain fog and then it escalated once more almost a year exactly from when it first started that next March I went to sleep at night. With the usual pain, etc..and then I woke up at about 3 am in the worst pain of my life and I am not exagerating.
I know pain, I gave birth two times one 9lbs 2 oz and one 8lbs.10 oz..and but this .this that I woke up to ..oh man was it pain ..every single muslce in my body was screaming, I was paralysed in pain. I had tears streaming down my face and the only words I could say was every thing hurts ,,everything hurts..I just kept saying it over and over, I could not turn my head I could barely swallow. My husband tried to help me out of bed it was excruciating. I thought omg this is it my life is over I will end up in a hospital or in a wheelchair the rest of my life.
My husband then had to dress me, through my tears and screams as each tiny movement sent me over the edge in pain. Some how we made it to the car and to a doctors , ( as both my gp and my rheumy were coincidentally unavailable that day ) I just saw a doctor in a clinic who was kidn enough to prescribe some tramadol. It was't until I had taken a few doses over 6-8 hours before I felt some relief but I was in bed the next two days before I could see my rheumy.
He prescribed me prednisone ( and man does it help) and he gave me cortisone injections in both my shoulders as well. I stayed on the tramadol also for about 3 more days.
So I was pretty drugged up through the worst of it.
It is all thankfully all behind me for now. And not one day goes by I do not think about it and remind myself that no matter how hard today is, it is not as bad as last March.
It helps me to keep my life in perspective and to keep moving forward in getting my illness under control. I know I will never be "normal" and there will always be something , that is the nature of the disease. It is called the disease of 1000 faces for a reason. Sometimes what it is doing is obvious and easy to try to manage and other times it is lurking beneath the surface attacking the heart, the liver , the lungs, the kidneys. Not so easy to spot and really hard to manage..
I try to eat healthy, rest and even get some exercise in. Basically walking my small dog around the block a couple times a day.
Which is what I think I will go and do now. So have a good day.
Saturday, September 25, 2010
I can't go back and fill you in all everything that has happened in my life and brought me to this point but I can give a little bit of info to get us started.
I have already had many challenges in my life, I know everybody does. I am married, I have two sons, I did work but now I don't, I am adopted, I did not have the greatest adoptive home and yes I survived it, I have searched, I have found and struggled through that roller coaster of my life and survived it as well. I have a rocky marriage much of the time and still struggling through it. I have always had health issues and just chalked them up to life, and stress, and whatever seemed to fit at the time.
Then 18 months ago I got the sickest I have ever been in my life and as bad as it was it was a good thing as it finally brought me to my diagnosis of Lupus. So, In a weird way I am grateful I got so sick.
I am now learning all I can to live and survive LUPUS along with all the other regular challenges of life that we all go through.
I needed a place where I can just write down my thoughts, feelings, ideas, goals, struggles and triumphs..a little bit of therapy for me.
will it help ? I don't know. Will it hurt ? most likely not. Lupus may not be the main topic in my posts but it will most certainly be a factor in them. On how I handle things or view things etc. Do things or don't do things. I don't want it to run my life but I know it is part of my life.
So, where do I start...well for today..just to help set the pace...I have been in this flare for about 18 months or so and am seeing a rheumatologist ( rheumy for short in here) and I am taking a bunch of medications since last february and I am just now really starting to see some great progress.
I take a diaretic and blood pressure meds for my chronic high blood pressure that I have had now for over 10 years ( did not realize it was a symptom of lupus).
I also take celebrex for muscle and joint pain, which started 18 months ago( another symptom of lupus)
I take plaquenil, which is an antimalarial drug that is often prescribed to people with lupus to help control their lupus flares. It has minimal side effects and can help protect your internal organs. My liver was being damaged and since being on the plaquenil it has improved significantly.
I take predisone, a steroid, for the wicked pain , it is one of those drugs you always have a love hate relationship with because it is fact acting for pain relief but brings with it so many negative side effects. Like weight gain, swelling, moon face, emotional changes, sweating , it can lead to bone loss so osteoperosis, and many many more. So doctors generally try not to have you on it long term. It is a drug you need to ween off slowly so this can take some time. I have been on it since february and am getting down.
I also take Imuran, this is a very strong immunosuppressant drug. Because lupus is basically an illness where your immune system turns on itself and begins to destroy healthy cells and organs in your body. We need to stop this and we do it by suppressing the immune system with drugs. This is another one of those double edge swords.
As you lower the immune system it slows down the lupus and the destruction to your body butit also leaves you wide open to catching colds, flues, infections because your immune system is now not there to fight them off. So, you need to always be listening to your body and aware of signs of these illnesses if they come.
Because I take all these medications I also need to do blood and urine testing every 30 days to be sure my kidneys and liver etc are doing okay as all medications can create a level of toxicity in your body that end up doing more harm than good over time.
So far I am doing well in this department so that is fabulous.
I think that is enough for now on that stuff, it should be enough to help you grasp a bit of what is involved in daily medication rituals to deal with my lupus as it is at this point in my life.
I have spent the better part of the last 6 months accepting , learning , and coming to terms with what having lupus means and what things may or may not happen so I can be prepared. I am working very hard to try my best to maintain a positive outlook of all of this.
Some days are harder than others of course as life still goes on and regular daily things need to go on.
So I think I will stop here for now and write more next time.