Where do I begin???

How do I tell my children about how sick I really am? How do I explain to them (even though they are all almost adults) how short my life expectancy is? Should I tell them?

What about the rest of my family and my closest friends?

I'm at a loss for words today with this struggle. I have a doctors appointment in two days and my friend is taking me. He's going to find out EXACTLY how bad its been. I know I am going to cry in the office with my Dr. we are just that close that even with a hug he can tell how sick I really am.

How do I ask for medications that will aid in my comfort levels and quality of life rather then quantity? I am so tired of living this lie with the fake smile and saying "I'm fine" for the thousandth time rather then the truth.

Lupus has attacked my kidneys, my heart, my nervous system, my joints and multiple other organs that had to be removed already. I don't want meds that make me sick anymore they don't work either, otherwise it would be worth it in the long run.

My sons wife is due in January with my first biological grandson and I fear that he will never know me. For that matter the two girls born this past spring remembering me is almost null. I have pushed through so many things this past year that I am just worn out and tired of fighting. I know it sounds like I am depressed, maybe on some level I am; but I am just tired of being in pain and going to sleep every night wondering if I will wake up in the morning or every time I get a chest pain if that is going to be the last one.

I do take care of myself. I have lost nearly 30lbs in the past 4 months in an attempt to avoid diabetes on top of the nephritis. I just don't know what to do, think, feel or say to my loved ones at this time. I love them all so very much that holding my grand children brings tears to my eyes. So many lives have been lost this past year due to Lupus, I just keep wondering "am I next?"

But you look GREAT!

I hear this more often then I care to hear it. Its an issue with Auto immune diseases and I am sure anyone with an invisible disease has heard their share of frustrations concerning the inconsiderate comments from uninformed people that believe its just all in our heads.

While the truth is that my rosy cheeks are simply not health related they are in fact related to my disease. Its like blushing when you are highly embarrassed but times 100%, your eyes burn, your face burns and it hurts like hell even being in the sun.

My pale skin isn't because I don't love the sun, I do. I used to be so tan from working out in my gardens and just being outside all the time. I hated being cooped up inside the house. Now I fear going outside on a sunny day for fear of the prickly (more like needles stabbing me all over) feeling all over my exposed skin.

I posted before about my kidney problems; this is a common effect from Lupus. It attacks the kidney's, heart and nervous system primarily. I unfortunately have all of these conditions. My kidney's are failing rapidly, I have had had two heart attacks this year, one stroke, I have fibromyalgia on top of it all which prevents me from even taking a shower some days because the nerve endings are so sensitive that the water beating down on me hurts to the point of tears.

As of late I have had no insurance to get the medical treatments that I require to remain "comfortable". Its what my doctors tell me is all they can do for me now that I can't take many of the treatments because of my nephritis, heart condition and well my psychological predisposition to severe depression. Also add in there sleep apenea and you have a recipe for disaster. I can't take anything with acetaminophen or ibuprofen in it as well as an allergy to morphine and several other meds. I can't win for losing.

The past few days have been horrible, I can barely walk because my feet hurt so bad. I can't craft like I used to be able to do because my fingers won't cooperate. Its depressing and frustrating, I feel like a complete failure to my family and kids.

I do have one person in my life who supports me, wants to learn about this disease and has been there for me when everyone else abandoned me, including my own family; its devastating to lie to them and put a smile on my face when I know how crummy I really feel. I don't want them to worry about me, I care about them so much that I don't want to add to their stress levels by telling them how sick I really am.

Lupus, fibro, nephritis, heart problems, nervous system problems (seizures), strokes and a multitude of other issues often over shadow the pain. My pain medications don't work anymore so I have to make a decision about what to do next to be comfortable. I don't know how long I will remain here on this plane, I look forward to the next one and sometimes wish I hadn't been revived this past summer when I actually died. I know it sounds cold and even selfish; however, I can't help but think that my family would be better off without me and the worry that goes along with the care they feel.  

Living with lupus

I promised to try to update my blog again daily as it is really my only form of outreach I have. Especially lately since I have been flaring like crazy! I am writing to you from my bed, since I can't seem to get up or walk the past couple of days without a lot of pain that no amount of pain killers is even touching.

I know some of you have read the "spoon theory" but I must post a link once again so those who haven't read it can maybe understand a little better what its like to live a life with lupus...the spoon theory ... the woman who wrote it couldn't have explained it any better in my opinion and why we call ourselves "spoonies".

Basically Lupus is marked by a low grade fever, rash on the face and chest, painful swollen joints, migraines, sun sensitivity, kidney problems, heart problems and many others, these are just a few of the symptoms I myself endure. Its an auto-immune disease that causes your body to attack healthy cells and treats them like they are foreign or infected; thus activating the immune response and causing damage to otherwise healthy organs and cells.

I am in one of these "flares" right now along with my fibromyalgia; which in itself is almost worse then the lupus because it causes your nerve endings to become ultra sensitive and it hurts to even be touched, wearing clothing, brushing your hair, teeth, getting dressed is an exercise of pain and endurance. Heck it hurts to even have the shower running on my skin during this flare:(

After and since my heart attacks and stroke this past summer I am really scared about the outcome. I have lost so many lupus friends over the past year due to complications from the lupus it really makes me wonder why I am still here; my mom says I have the lives of a cat (I'm not sure if that's a compliment or a complaint, lol; however I have endured much worse in my years of life and I will do everything in my power to fight this as well. I have never been a quitter or someone to give in or up easily; some days are honestly harder then others to maintain the smile through the pain and keep on going no matter what.

Where cancer is concerned there are 150 cases diagnosed every minute according to cancer stats; where there are currently 500000 to 1 million lupus patients already suffering with this disease and according to lupus and fibro facts 16,000 are diagnosed annually. This does not include those who are and will continue to be misdiagnosed frequently because Lupus mimics so many other diseases such as Lyme disease.

The medications are a cocktail of cancer drugs, anti-malarial medications, steroids and of course the never ending trial and error of medications to keep us comfortable and try to obtain "remission" which I mentioned in an earlier post that I don't believe in, simply because when we aren't flaring the immune system is still actively attacking us. There has been a new drug called benlysta which has been on the market for about a year now and most insurance companies don't cover it as it is extremely expensive and still not many doctors trust it for the treatment as of yet. At least my doctors don't trust it enough to try it on me, even though I currently have no insurance, so I guess it doesn't really matter to me anyway.

I just want to have some kind of quality of life, laying in bed, not being able to do the things I love, having to cancel at the last minute on those I love is devastating and depressing at best. So for now, I am going to give in to the uncontrollable extreme exhaustion and go back to sleep for a while.

Love and blessings to you, thank you for reading and subscribing to my page. It means a lot to me for those of you who don't know me to want to read and learn from my life's experiences.

So many things have happened since my last post I'm not sure where to really begin.

Well first off my third grand daughter (biological) was born on Easter Sunday, I wasn't allowed to be there for my daughter or granddaughter who ended up in the NICU for a few days. It broke my heart and just about killed me to be away from my newest grandchild, but I had to respect her parents choice. I have only seen this beautiful little girl once since her birth and have had one picture sent to my phone of her on Halloween.

This is the picture of me and Sophie at our first meeting in July of this year at my cousins wedding that I was photographing for her. She is just so precious, she took to me right away and I believe she remembered my voice from talking to her mommy's tummy through her pregnancy.

Also in April my (soon to be ex-husband) decided that he was going to cause my youngest daughter so much stress that she had herself removed from my care via CPS. Its been a long summer of classes, supervised visits and ultimately giving custody of her to her father, against my better judgment but its what she wanted and she is 16 so I gave her up.

On May 3rd I was in an auto accident with an old friend of mine; I didn't know it at the time it was him that I hit but only found out later on who it was and was so thankful he survived.

 

The red car was his, and yes you see right its in two pieces, the second pic is the car I was driving. I was lucky enough that I had a local EMT right behind me to keep me awake, still and coherent. I was lucky to "walker" away with only a broken pelvis; Al (my friend) wasn't so lucky, he was hospitalized for a few days with internal bleeding. I thank God every day for sparing us both, I don't think I would have wanted to live knowing I had killed not only another driver but an old (elderly, Vietnam veteran) friend. They wouldn't tell me who he was until days later. I wish I had known sooner, I would have visited him in the hospital to tell him how very sorry I was. The only thing I could do was help fight his prosecution and not take anything from him financially.

Around the middle of May I suffered a heart attack and found myself hospitalized once again and my marriage over. I stayed with some family members for a couple of months only to end up back in the hospital with aspiration pneumonia because of an allergy to a pain med that my doctor was trying to help me with, needless to say they thought I had attempted suicide (which I did not) and they knew because I had more pills then I should have had in the first place in my script left. Besides a week before this my youngest aunt passed away from Parkinson's disease, which was the mother of the family member I was living with and also the family member who saved my life when she found me choking in the morning.

In July I moved in with another friend and took over helping my cousin get married. I did her flowers, helped her decorate, find her dress and photographed the wedding as well.

She made a beautiful bride and is happily married to the mad who originally proposed to her when they were young. A special place was held for her mother and my own mother filled in for the unity candle lighting. It was very tearful and special day for our entire family.

This is my crazy family of brothers and sisters and significant others of those who are now left on my moms side of the family. Left to right back row Al (my moms boyfriend), my mom, uncle Larry, his wife Aunt Linda, Kelly, Ben and down in front is my Aunt Cinda. I love this crew more then they will ever know and couldn't be happier that my mother found a man who treats her right, respects her, sticks up for her and obviously loves her. She deserves it after being widowed so young. Thanks "Nissal" for being such a great man and loving my mother like she deserves to be again; who ever said love only comes around once never saw these two together.

I have since lost all insurance and having trouble getting my medications to remain healthy. Luckily I have moved in with some great friends that opened their home and hearts to me. I couldn't be more humbled by their love and support while I go through this trying time, I thought I was alone but I found out that just when you are about to give up on yourself your truest friends come out of the woodwork and pick you up, brush you off and kick you back into the ring yelling "one more round Tater". God I am blessed to have these crazy friends of mine to love me and for me to love as well. Its true you don't know who your true friends are until you have nothing to give but yourself.

I know this is a lot of information to take in at once, so I will try to get back to blogging again daily about the trial and tribulations of living with lupus. Its not been easy, I am flaring and have no meds, I sleep a lot, can't get around very well and am in constant pain (its like the flu that never goes away as far as body aches), the joint pain limits my ability to do the things that I love the most...crafting; but I am working on that as well:)

Until next time, peace, love, prayers, and butterfly hugs to those of you who read me. I will continue to try to update as much as possible. 

Lupus SUCKS!

Anyone with Lupus knows or has been told to keep their stress level to a minimum to avoid it causing flares. We all know its darn near impossible to live stress free or to minimize stress in your life, especially for me since I last wrote. I will start from the beginning of the stress and flare that I am perpetually in.

I hear a lot of people with Lupus claim to be in remission first of all; personally I don't believe in remission in this disease it still silently is working against your body destroying organs and such without them even knowing it. I have lost now 2 lupus sisters to this disease who were in "remission". Don't let the meds working fool you!

Next, I was chided and kicked out of a lupus support group on face book because I chose to have a kidney biopsy and I was "scaring" newly diagnosed patients. Well excuse me! I thought taking charge of my life and health were important as well as being honest about the disease and the process our bodies go through! Long story short, my lupus IS in fact affecting my kidneys and I will now have to have twice yearly biopsies of my kidney's to keep an eye on the progress of the disease.

On happier notes:

My son got married to his long time fiance nearly a month ago now. It was amazing! I put a lot of work into it to pull it off in a short time but it was worth it! Here are some pictures:

 

I got the dresses, suit, church, hubby dj'd, made food, did the flowers and a multitude of other things for the wedding with a mind over matter attitude.

The next step was to do maternity pics of the kids before the baby came:

Then finally on the 6th of March Cambriea Marie arrived!

She weighed in at 6lbs 11oz and 20in long. She had a rough time coming into the world and needed to be resuscitated at birth:( She is home now and doing fine after one more incident of not breathing and her parents getting security called on them for breaking hospital rules when they took my sons younger brother into the room with them. It blows my mind how some hospitals disrespect the parents choices. It was just ridiculous! I made the snuggle sac and hat pictured above and am willing to share the pattern if anyone is interested.

Finally, the count down is on for my next grand daughter who is due in 3 weeks to my oldest daughter. I love the babies and can't wait! Now I am moving onto planning showers for the girls as there are still things they need and want. They both made me promise to wait until after the babies were born to throw showers so that is next on my stress out list after the birth of Sophie Lynn!

I am back now on meds that make me sick, crabby and I annoy even myself with my crabbiness! When I look over the past few months I can't believe all I have been through and the coming months for what I will be going through. I also get to see a new rheumatologist, but he is 2 hours away. Now finally I have enough proof for treatment and I am hoping to get off "the crabby" meds all together! Lucky for me its the same Dr. that my mom sees for her RA, so I am hoping for the best.

So, now I think we are all caught up on what's been happening in my life for the most part, lol.

Love and Peace to you.

Lupus Support "Cliquies"

I have spoken of physical pain, the fog that confuses and frustrates, the medications that may or may not help, the procedures some of us endure just to get to the facts. So here are some facts that are rarely heard and often judged by fellow lupies (those who have lupus).

My doctor gave me a fact sheet the last time that I saw him from a medical journal not available to the public, in that report it shows that most of Lupus patients are misdiagnosed many times before finally getting the correct diagnosis. The ANA (Anti-nuclear-antibody) in this article is stated to be correct less then 80 percent of the time, often there are false positives and false negatives. There is no true way to diagnose lupus even though there is a myriad of tests that rheumatologists use to diagnose the condition.

I have had the misfortune of being in the percentage that does not have the "proper" blood work to support my diagnosis for the local rheumatologist to see me. He saw me twice, the first one was a "get to know you" and blood work. All of course came back normal because I was receiving treatment from my GP who at the time was only one of two people who believed I was actually suffering with lupus. When I saw Dr. Marius Racovan the second time he told me there was nothing wrong with me, when I questioned the statistics, he WALKED OUT on me and then followed up with nasty letters to the two Dr.'s that believe I do have Sle and ARE trying to save my life, keep me going and comfortable. I was forced to call this doctor again yesterday after my kidney biopsy shows Lupus Nephritis, his office called me back and stated that it was not consistent with SLE and that I needed to talk to my GP about the letter he sent him saying that I was confrontational and argumentative with him. EXCUSE ME? A professional kidney Dr. says it is Lupus Nephritis (actually 3 do, one from Mayo Clinic) and he REFUSES to see or TREAT ME because I proved him wrong? Yeah, great doctor he is, it sucks that he is the only one in the area as well! Now I have to go to either Mayo clinic and stay there until they are done "figuring" me out or spend multiple days traveling to see another Rheumatologist HOURS away from home.

I used to belong to an online support group on facebook. When I announced that I was asking for a kidney biopsy I came under heavy fire by another lupie. It was her opinion that I was scaring newly diagnosed lupies and that me asking for one didn't qualify me for getting one. Obviously my kidney Doctor disagreed and offered it as an option for me. I couldn't send this person a private message, so I called her out on her attitude in the supposed "support group". I was quickly dumped from the group and after a vote of the admins I was refused re-entry without an explanation. Great support group right?

Its bad enough when people without lupus don't "get me" or when a doctor rejects a person because of lack of labs, but when you are ostracized from a group of people like yourself its a deep hurt that really hurts deeper then anyone can understand. As a consolation prize I was introduced to another group; which is BY FAR better then the original one. The people in the new group are not judgmental at all and I am sure that if I told them about what had happened with the person who put me in there, they would still not exclude her or reject her as has been done to me.

Funny how some think they are better then others and their truths are the only ones that matter, even though we all live in different parts of the country and world! I am thankful for my 28 below family and as far as I am concerned Lola vs Lupus is a clique, only the cool kids get to stay, its like high school all over again and they really need to take a long hard look at what they are doing and how many members have quit participating with them because they are just not all nice people, heck Lola very rarely even participates in the group. How can you run a support group without participation and knowing what's going on? Furthermore, shouldn't administrators of support groups be able to be contacted even if they do not friend new people, maybe they should be required to friend every new person in the group so they can be contacted and get to know the person out side of the group before they make the decision to judge others so quickly and with no explanation.

Again, to my 28 below family, you are great and I am truly MUCH happier in this group then the other one, I don't do cliques well and I love the sincerity of the people in it. Thank you to everyone in 28 below for being so loving, kind, generous and helpful through my difficult times.

If yesterday is any indication of how 2012 will be, I'm going to sleep through it!

Several posts ago I told a story about my husbands best friend and our fishing adventure with him. He's always so full of life, laughter, jokes and love. He is a wonderful friend and father to his children. His name is Scott, 40 years old and yesterday had a heart attack right in front of his teen age daughter. His son who is in the military was due back to his base today and was on his way when he received the call about his fathers hospitalization.

I won't lie, we didn't sleep easy last night as we worried about our friend who ended up with two blocked arteries and heart function of only 30%. They wouldn't let anyone into his room, pumped him full of morphine and wanted him to sleep a bit so they could attempt to do a second stint since he was to weak after the first one to continue.

My dear friend and honorary brother lies today in a hospital bed (40 years old) with his children, brothers, sisters, parents, friends and others by his side praying for his heart to be healed.

I know the last few posts seemed to be like me whining about my lupus, but it was more informational then whining or at least that was my personal attempt. I admit having the problems I do is scary but to have it thrown into my face that he could be me really hits home right now.

I feel like pulling a Rip Van Winkle and sleep the rest of the year away since it started out so horribly. I won't do that of course because I have 3 babies to look forward to this year and we are now only a couple of months away from the births of the first two and Scott is now stable. So maybe there is a silver lining in here somewhere, so this new year I believe will be about second chances, one more time to make things right in life and live it to the fullest!