Monday, September 27, 2010

a step in the right direction...............................

Today I am looking into getting a walker. I know right now I am doing very well with my walking. I am able to get around the block the last week or so without it taking forever or having to stop. But I know I can't count on it always being this way.

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'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 it is from freecycle it is 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

31 Things About My Invisible Illness You May Not Know

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 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

Just another ordinary day..........

Didn't sleep very well last night but that is okay as my days are not filled with much anyway. So getting some rest will not be a problem.

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

A little bit of background.........

So, it is kind of hard to start in the middle of a book...but that is sort of what is going to happen in starting up this blog at this stage in my life.

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.

Thursday, September 23, 2010

A bit about me ........................and a bit about lupus.

I just felt like starting a blog more a place for me to just mull things over and maybe get the word out about what life with lupus can be like.