May - Lupus awareness month

Wow, this month has just flown by...spreading awareness re: arthritis as well. I didn't realize that there were so many different types of arthritis? I've got rheumatoid arthritis, it may be due to my lupus? But, just because we see a rheumatologist doesn't necessarily mean you have rheumatoid arthritis. I knew, I had arthritis - but doesn't necessarily mean it's specialized. I'm in my mid thirties now, and it can be so painful. It was when one day, out-of-nowhere, well during a HUGE flare, my husband was trying to move me out-of-state because of another woman, ugh...but I was in deep depression, started just wearing totally black sweats, showered (which is much more than I can say now! It's been a month or so...), drove to and from work, stopped talking socially, also I could no longer look at myself in the mirror. I've never been so depressed in my life. Why is it when men cheat, it seems to be okay, run-of-the mill everyday thing? But, if a woman cheats, it's such a tragedy...and she's the neighborhood whore! I hate how men always seem to have the upper hand in everything?

I think the reason, that I never finished this in the month of May...bc May was a horrendous month and I am looking to God, more than I had in a very long time.  I ask God questions everyday, why me?  Not only does it affect me, but it affected my entire family's lives.

Last night, I spent a great deal on looking up organ donation in Colorado & Wyoming.  Since I had finally renewed my driver's license, I made my decision to donate.  There are so many things that they can take from your body, plus if you give a whole body donation, in the State of Colorado - they cremate your loved ones to help in "funeral" expenses.  One of my girl friends was pretty upset that they don't have that program...but just glancing over in OK, it is much more extensive and idk if it was the website that I was on...bc I was just clicking random sites.  All I know, is that there has to be a medical school or facility that could use her body, then return her remains already cremated.  Actually, if you type:  organ donation in Oklahoma free cremation...several sites popped up, but I'm not all that computer savy.

Due to whatever pain that I "may be" experiencing isn't quite totally lupus, per my rheumatologist.  He says that lupus pain can be treatable with pain medication.  I've been having strange things happening, pains, aches, swollen, red and definitely water retention.

Ugh, my life really sucks!!



I have been diagnosed for about 15+years of lupus nephritis, I also have the osteopenia in my lower back & spine (I was going to PT 2x week, but the therapist I was working w/had to leave in a week for another job...the PT that replaced her did nothing, and has me regressing back, starting w/cane, shorter walking periods, needing to use a wheelchair sometimes). I'm sad that I lost this wonderful therapist, bc while working w/her I was able to put away the cane, finally take the wheelchair out of the car. She had me doing my therapy on a reformer (which is basically using your own weight & help w/springs, which really helped me gain strength). In all these years if living here, she was the first one to be reversing the signs of my frail bones. My whole back & spine have always hurt, but way up (near my prednisone hump) it aches so badly. Now my right leg - up to my hip goes numb a lot, my hands have been really giving me a hard time. I'm scared that one day I will lose my right leg, due to circulatory problems (Raynaud's, diabetes, or whatever the reason), I'd rather die than have an amputation. They tried to take out my gallbladder many times over, but I fought with everything I got. I'm not sure why we have a gallbladder anyway, it really isn't necessary (but on that fact alone, is NOT a reason to have something removed, unless damaged), but we were obviously born with one. Surgery or removal of anything is my last resort. I have terrible neuropathy that burns, morning and night in both hands & both feet (when I can feel my right foot). Idk why, but the therapist used to think that I always leaned to the right, but to's normal. As she was straightening me up, I lost balance, fell a lot, especially in my sleep my large head would be wedged between the bed & nightstand. I had to go to the ER once bc a bump just rose up on my forehead, which I assumed was from when I fell off the bed that day, my head landed on my purse with a big metal buckle. They brought the swelling down with anti-inflammatories, but I'm severely photosensitive and experienced a terrible migraine. I was given medications for my migraine, then moved to a room with the lights turned off, but still hooked up. Then someone (I don't know who), possibly my guardian angel, put oxygen on me while I was waiting for my husband. He said that when he came to get me, I was snoring like some large animal, passed out (during the time frame of all the unbalanced, falling -seemed like everywhere. I was experiencing insomnia, no matter what heavy sleeping drugs I took). So he let me sleep for 2 hours & finally woke me up to go home. Of course, I had to follow-up with my primary doctor. Again, the balancing issues, almost falling down a flight of stairs, while at his office we were trying to remember what had been going on recently, as if something was triggering this balance, insomnia, etc. then, while I was going through what had happened at the hospital...his nurse immediately checked my pulse ox, mid 80s was the result...immediately started oxygen therapy that same day, a respiratory therapist had to check and make sure I was getting enough oxygen, my pulse ox just kept dropping. Finally stops around high 70s. They put me on oxygen 24/7, amazingly I was able to sleep again. They did a sleep study, of course my husband had to be with me...they thought...sleep apnea. Nope. While they were doing the study with that crazy head setup and probes, to make sure they were measuring everything. I was not put on oxygen simultaneous, they wanted to see what type of raw results they would get? Of course, I think 2 hours into my sleep, the nurse came in to attach the oxygen hose to my head/mouth contraption, which of course, woke me up. Just the feeling that she was watching us, made me feel creeped out. Like why couldn't she watch the readings off the machine, then watch us? No, she wanted to watch the whole sleeping experience, it irked me out! So, no sleep from the time she attaches and turns on my oxygen. There was no sleep apnea found, but it was strange while I would sleep after a certain amount of time, my oxygen just starts going down, a lot. I went to National Jewish Hospital in Denver, saw my fair share of pulmonary doctors, testing on me like I'm a Guinea Pig, to find nothing substantial. After how many visits? Too many. Avista Adventist Hospital in Louisville, attempted to do some testing and they supposedly found something, but in the end, it was all inconclusive. After my initial lump from falling...I started to get lumps on the back and too of my head, of course covered with my head of hair. They were very painful and grew much larger than the initial lump from falling off the bed. My primary had to be on vacation during that time, so his partner saw me. She was speaking so fast in medical terminology that I could barely grasp, in the end...she's like it will either go down on its on, but generally we would have surgery to remove it, but bc your bump is over a large part of area slightly raised that would be a last option. She said it is generally a smaller area, in which they take a scalpel and cut it clean off. I look at her like okay lady, back away...I will wait for my doctor to come back. Several weeks pass and I continue with these lumps on different parts of my head, but generally to the back & very painful to touch. My primary took a stab and just said it was an accumulation of pus and that I need to put a hot compress until it drains down? I think he meant out? Well, like I said it is in the midst of my thickish brown hair, simply applying a hot compress isn't going to reach it. So I would lean against the bathtub on my knees and pull my hair out as a ponytail, my husband would fill a large pitcher with practically scalding hot water, and slowly pour over the spot where the lesion, cyst or whatever the hell the first doctor said...btw, I never really found out exactly why or what it husband and I had to do this like two to three times a day, after a few days, they started to shrink. I wanted to know exactly what was inside of them, so I wouldn't wash my hair. My primary thought has to come out somewhere, right? There had to be a pretty good amount, so we couldn't miss it when my husband slowly poured the scalding water over it, plus it wasn't like one day, it totally deflated...all gone, it slowly got smaller, until it was almost flat with substantial pain if any pressure was on it, so I couldn't sleep on it. We never found out what it was, of course later when I press my doctor, '...what the heck was that!' Of course, the lame answer of I don't know, which meant, "It's probably from your lupus." Yes, I get that answer frequently...if there's nothing to say and of course, this doctor never admits that he doesn't know. At least, my rheumatologist has the guts to tell me, if he hasn't seen it before or doesn't know...he just says, "I don't know."


Is it really Greed or Grieve?

I guess now we are in a pickle, I don't know who said that originally, but you generally you would hear that phrase on a cartoon or a comedy. The economy has taken a toll on everyone and it finally came around to hit us, and hit us hard. We are barely holding on and wonder how long we'll be able to last? My husband is not very optimistic because I'm on disability and I can't work... my husband believes that is what is currently happening to us, but it isn't... it's because he isn't getting much work, coming home earlier and earlier. He made a comment the other day, "since you've been on disability, it seems that we are going down..." assuming he's saying we are drowning with ship and anchor. I get Social Security payments, so isn't that my contribution? I've not worked now in a few years, I did some consulting, but other than that, nothing. I've pushed all of that out of my mind and I'm really trying to take care of me, my body. It almost seems as if it is daily, hours, minutes ... my brain is just getting useless, when I talked to my daughter about it, she said that I definitely can't produce what I used to and that it would be very difficult for me to enter the work force, and I agree. My husband on the other hand says, "If you weren't sick, you'd be working... doing what you did before." Seriously, is he just ignoring the fact of how much Lupus has already attacked my brain and I've had several injuries, which includes my head and I've definitely know that I've experienced Lupus Psychosis. I've had crazy mood swings for years now, it's only been worse with time. I've already gone through my grieving of losing my ability to work, acting psychotic at times, definitely having swing moods and now... I don't do anything anymore because I'm so ignorant or just forget altogether. I used to have such a memory that has totally left me and has been a blur for a long time now. I was thinking that I could answer phones or something, but my daughter said that I wouldn't know what to do and I never follow through with anything. How dare she? That is one thing I regret when raising my daughter is the importance of manners. She could at least take my feelings into consideration and not have said it so bluntly I wouldn't have felt to useless. My husband is totally in a dreamworld if he thinks I've got the same capacity that I used to be at when it's been almost four years since I've done any legal work. Everything changes with time, even I could relate to that...I keep wondering if he thinks that I could go back and be the same, he is in for a HUGE surprise. I think that in time that I may get back up to the way I was, but I definitely will need breaks to take naps. I get so tired these days and I could barely do two things a day, as it is, and we aren't talking rocket science... more like going to the grocery and/or bank. Having physical therapy (PT) and a doctor's appointment is an example of what two things a day means to me. Geez, a noise scared me! It was my phone vibrating so loudly that I can hear it from afar. And other times I can't even tell it's ringing? That makes my husband and daughter nuts if I don't answer, they just assume something bad has happened to me. I'm not that incompetent yet. I can still do little things here and there around the house, if I feel like it maybe I'm just plain being lazy? Ok I never thought I would say that to myself. I'd have to admit that I probably could do more, but then I get so much more exhausted, quicker too. Everything seems to be like a huge effort, Yes I know that I probably could do more exercise, but when I do things like going out it is a huge inventory for me to handle. I'll have to bring out two huge bags and with all my tanks, hoses and cannulas. I've always got to bring an extra one just in case. You never know and I've had to this happen to me more than once, so I definitely know and it is such a hardship, because if I get too tired...I could lose consciousness or have a grand mal seizure or an epileptic event. Then I would really be stuck at home.


15 minute interview (supposedly)

I'm scared to say, but she sounded like [a pharmacist I know] Sara & like OMG (this crazy lady is applying for life ins, ha!)...she was making me spell every darn thing, so I pulled out my meds list from my primary doctor who's kind of the hub of all of the doctors. It was so funny, she'd ask so what is the diagnosis for taking this medication? [What a cheer 4 dear!! Yes, I'm a psycho hypochondriac!! And guess what?] The doctors who specialize in the certain type of diagnoses as to why I'm taking this? (As I repeated her words...) making her feel uneasy...then, my answer: 'umm, well they ran every test in the book and they couldn't find anything wrong,' so when the doctor can't figure out what the hell is wrong? I get this answer, "well...we've done what we can and everything came back normal...probably from your Lupus [auto-immune disease]." But, the only thing is that...well I'm rolling out of bed, dizzy, kept falling, etc. and the pulse oximeter keeps showing my ❤heart pumping like someone sprinting, [but I'm sitting] my oxygen level is just continually dropping w/no end in sight. All Medicare needs as a diagnoses and for them to pay for equipment is @88%. As time passes (meaning weeks, to months, then increase in liters) yeah - something is wrong, right? So...I do what any person or patient would do...find a good specialist!



Trying to keep up with technology has really left me behind . . . and, I basically forgot. I just relate it to +lupus fog. I am really going to make an attempt to keep up. I've been doing pretty well lately, although I have to admit being away from the hospital makes me feel strange (now that's very freaky!). Now how many people can say that? It is pretty darn disfiguring for a woman like me to actually admit that type of vulnerability. Here I am, sitting on my couch, trying to watch TV on a Wednesday evening . . . "The Americans" is the show currently on the tube. Keeping me warm is my old pal, the gentle petting 'feeling' of the universal language of touch, I can't believe how long he's been my pal. Initially, when diagnosed with 'Lupus' or 'mixed connective (?) tissue' disease, I didn't have my old pal and I'm reminiscing after having my Cytoxan intravenously, being home (supposedly resting), alone- I wept. The unconditional love like the innocence of a child, one day that I aspire to learn from . . . why do humans feel threatened by compassion [or love] when it is the natural feeling? I wonder if there's too much detail that our physicians let us know: maybe I'm experiencing psychosis? I almost don't know how much is too much, as to tell our loved ones, as to tell our physicians and/or therapist? First, we are told that our body has betrayed itself, we are told to expel our inner most feelings (thoughts/physically) so our physicians can continue to give us the help or nurture (or basically drug us to death!). Depending on what wording we choose to use with our physicians they'll either have us admitted & drugged or just write you off as a 'hypochondriac,' when a patient is labeled as a 'hypochondriac' their complaints [which is what I learned from working in all areas of running a private practice] I had intend to become a R.N. (registered nurse) when I initially graduated from high school. I never thought of myself of being anything more than administrative and nothing more [being compliant] like a wife, mother & friend. Perhaps- I had already known that my mind was not meant to be more than an assistant and/or secretary. What a waste of a brilliant mind, why give me a photographic memory, a need (appeal) to research every little thing, even if it meant to be nothing [like handling your anxieties (information)] when learning medical terminology, ICD codes, billing (procedure w/individuals that have insurance whether there is a primary or secondary or private pay or reimbursement. Knowing all of this information before being diagnosed, which has kept me more informed/educated decisions. I hated the 'threatened' feelings of when an emergency arises and it is a matter of minutes to make life long [amazing chemistry of giving life] decisions. When pregnant at 16 the ignorance of a 'young adult' mind, having a high-risk pregnancy . . . knowledge of our child's position [whether it affected 'breast milk'], that she was breach and there wasn't any time to think, if I should have general anesthesia, if there was [wasn't any] time, I had fully dilated and no one had paid any attention (just because I said I didn't need a wheelchair) maybe because I had experienced a life (of its entirety) long parental absence [it DOES make a difference as to 'how much?'] maybe if there was guidance/education of sex, the toll of the decision, what type of emotions aspired. Giving birth has nothing as to the 'mental' decision of losing your virginity to someone that isn't taking the type of commitment as you are (thinking to yourself) boys can make life, choose gender, and the decision of life [termination, adoption or the costs] that you are making for yourself and the unborn fetus. Just like the decisions or desires of treatment of your disease . . . we were at the hospital as signing away our life (there was no 'informed' decision as to whether we should harvest my eggs, that treatment will leave you sterile?). I could've fulfilled my dream to at least have more children if I chose to or if we, my 'husband and I' felt that we would want a child that shared our a part (DNA) from each of us to make one whole life. If only I was more informed of what the future held for me, as a woman (whether I give birth) the kinship of that love 'closeness' physically/mentally that you are as 'one' with your fetus for approximately 9 months, the re-shaping, that my 'hips' could hold another beating heart, that whatever we chose to eat or do (exposure to second hand smoke or just 'smoking' in general) the effects [let us know that our fetus and I are as 'one'] that eating strawberries or that getting the 'right' or full nutrition value. What if I decided to just have French fries, donuts, 'frozen dinners' (would you want your child that has parts of you and the boy's 'sperm' that fertilized your egg) eating? Can we tell that it officially had a 'mental' imprint on my mind some twenty years later? It is all about the information that our research let us 'educate' ourselves.