Begin Again

Dear Reader(s) shall begin again…today, I’ve decided to start my morning routines: I was in too much pain, I was supposed to have pain injections with steroids. However, my steroids, have been bumped up to 4x regular dosage, due to being ill and my doctor has cancelled my appointment. I am to reschedule 10 days, after I’m all better and supposedly to get COVID-19 tested. I purchased regular test, at local grocery pharmacy. 

I have lumps all over my body, that are hard, like painful bruises, where I am on painkillers: morphine and dilauded, daily.

Tomorrow, I am scheduled to get haircut and style. Recently, I was tested for EEG, allergic to the paste, included losing clumps of hair and clogging the drain at home. Eek! 😬 EMG, lots of pokes, with electrical stimuli and alcohol swabs, causing very dry spots on extremities! 

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!!

Complications

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 me...it'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 was...my 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 pus...it 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!

Technology

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.

Heck, Where Have I Been?

I can't believe how long ago my last post was updated...I was having a somewhat good day until I did the un-mentionable...I went into a store with very cute clothes, I thought to myself...it has been a while since I've been in a store to shop. I've been shopping online for my needs bc I don't get out very much and that's what used to exhilarate me. I found some cute stuff on sale and some not...I kind of was thinking of skipping the "Dressing Room" part, but in these small, trendy stores...their returns aren't so easily done. So I went into the dressing room and did it. I couldn't believe how big my mid section was!! I wanted to scream and just jump off the second floor of the mall. Here I am with an xs sweater and one medium...they fit, but too short, I need one to go over my belly, ugh. I was determined! So I picked up the highest sizes I could find...generally I would put on a size 9 and that would be okay. Geez, I couldn't find anything over size 12, but I took them into the "Dressing Room". To my demise, every size did not fit! I should just shop in maternity (how embarrassing). The newest thing I've been doing has been drinking lemonade at Starbucks, I thought to myself how bad can it be? I drink juice all the time!! Of course, I've been drinking for awhile and became a "Gold" member on the Starbucks Rewards, system. Nowadays, almost everyday, I go through the drive through, by my house and I used to order a grande size (which is their medium), but now I've bumped myself up to the Venti size(which is their large). I'm sure this Starbuck run is not helping in the accumulation of fat. I've got an appointment today with my physical therapist and I believe that I have decided what I want to do! I want to work on my mid-section (trunk) of my body. I would rather have lipo or something...but can't afford it. I don't know what the outcome will be. Nothing, and I give up again? I see my teenage daughter (she looks like me when I was 18) but she just had me buy her two caramel apples: one with M&M's and the other with peanuts! She's an extra-small or size 0! That used to be me, even when I was diagnosed, I just kept hacking at my body like a crazy person. I finally gave up and just dealt with what I have and it only gets worse. My husband says it's me that doesn't want to have relations (SEX), but I believe it to be from my body. Being used to size 4, forever...now I'm somewhere in a double digit category?? I let everything go. I have been dealing with a lot of new symptoms of my lupus and I just let it all go...the piles seem normal. I was a type A, OCD freak, who couldn't sleep if there was a tiny mess in the house. Now we have maids and my husband, who really tries, but definitely not up to par with what I am accustomed to. I let my clothes in the closet sit in a large pile so that I don't even have to walk in. I can only wear so many items and I have a generous amount of clothes from my smaller sizes which I refuse to even look at. It is like I've become the opposite of me? How could that be? Really? I had to give in that my body can only do so much and I don't get as sick as I was when I was around 125 pounds. Now, I'm a whopping 162 pounds, bigger than I was when I was pregnant!! I want to roll up into a small ball and just cry. I'm supposed to be making dinner...but I am almost...I won't do anything. I'll have a salad and something, what I usually have but I'm still getting big, bigger and biggest!! I hate my body!! I hate what lupus has done to it and how deformed I am because the fat is allocated to different parts of my body making me look like a weirdo!!!!

Posting re: comment from Roberta Brown

Ms. Roberta Brown, are you wanting to tell me your story that you have Lupus and continue to work until you are 50 years old? I wasn't sure what kind of question you were wanting or was there something I said that you needed more clarification? Please let me know!!

Thanks!!

Living With Lupus: new things, new ideas & finally new treatment...

new things, new ideas & finally new treatment...

Yesterday, what a day!!! Benlysta got approved for treatment in Lupus patients which hasn't happened in over 50 years!! Such an accomplishment which has been all over the Lupus community. I don't even know how to express how I feel about having a drug, finally. I was diagnosed in 1998 and has been dealing with my Lupus till this day. In the past, we had two options: first, you can deny the drugs and just check your body, yearly or even more often. Secondly, you can take the drugs to keep you "comfortable". Being comfortable means that you take the drugs that they think may help the symptoms that are existing at that time and just deal with the complications and reactions from the drugs. You have to make the choice of what is more important...staying around longer to give up another organ. Depending on what type of Lupus you have, some organs are already compromised. As for me, it happened slowly, but definitely. At this moment we are dealing with my liver. This was something that the doctors had already told me would be coming because of all the medications that are given, your liver only can take so much - and after time, it will become one of your "problem" organs.

finally, insurance??...& message to Dorie

This is what it has come to...I have Medicare A & B, seperate drug insurance, supplemental insurance. I think that is about it...but when you add it all up, wheew! I probably should've stayed on my husband's insurance. IDK, things change from day to day. I worry about everything, everyday or at least that's how it seams. My medication can be so pricey that I would stop taking or take less than what I am supposed to take. Everything is so expensive these days...for instance, I stopped taking all of my anti-seizure drugs. I know that it is a bad thing to do. I have to make sure that I stay home all the time. Going out a seizure just can happen. I find that when I am home it is more calm and I make sure to get a lot of rest. Sometimes that's not enough, but I do what I have to. Now I am experiencing dizziness, inability to see what I am reading and then it blurs out to the point where I have to take a second look and have it explained to me more clearly. This is not a good thing, to skip your medication, but I can't say that I don't because I do, financially, it helps me to get through month to month. Unfortunately, I have so many medical bills (which is a lame excuse, but it is life). Food or medicine, that is what it has come down to...and I have a child to care for...I know that my ability to do many things have ceased, but I still try. I definitely pay for it. I can't walk down the block. I can't watch movies. I can't even get down my stairs on certain days. And the others...I can't even get out of bed. But that's life and I have made my own decisions and deal with what I can.


To: Dorie, I'm sorry that you are going thru so much right now. I have fibromyalgia as well. It sounds like you & your husband aren't doing so well. It is hard on our partners to deal with our disabilities. It is the same for me, I depend on my husband for everything. If he wasn't here...I don't know what would have happened?? SSDI can be a long and excruciating matter. It was practically two years in one month! When, I finally got it!! I was really scared before my hearing as well. I didn't know what we would do if I didn't win. I prayed a lot. My husband took off work to come with me to my hearing. Your attorney will come with you. Be prepared to answer questions...in case the Judge asks you directly, which I assume he/she will. Your attorney will prep you for your hearing. Or at least that's what they are supposed to be doing. The only advice I can give you is to be honest. The other advice about your marriage...I would open a seperate account. You can keep it at the same bank or a different one, but make sure it is only in your name. You should do this way before your hearing. If and when you get approved. Then ask for your disability check to come through your bank automatically. Make sure your attorney knows this as well. This is just some preparation for your future. I guess that's all I can really offer to you. Good luck and I wish you the best.

SSDI; Medicare; Etc.

Whoa!!! The roller coaster ride has begun. Filing for SSDI (Social Security Disability Insurance). 98% of the time, the initial filing is always denied. Then we had to go through appeals, and I got scared at one moment. The last thing that I had was showing up at SSDI to meet with the Judge. If he didn't find me disabled that I would be left with only one more resource to try to get SSDI. But finally, the Judge did rule in my favor and found me disabled. That is only the beginning...I am married and when I was working, we are consider a middle class family. We had used everything with the exception of one thing. It was a family thing and I didn't know how the family would react. I know that I can sell it for my daughter's education, but other than that...I wasn't sure what to do?? I never was able to apply for Medicaid because my attorney knew up front that I would be denied. You basically have to be below poverty level to get Medicaid help. Now I am thrown into regular Medicare. Whoa!! Take a breath, a long one. Slowly release!! I was insurances under my husband's company sponsored insurance group plan. It was VERY expensive to say the least. But to have Medicare and all the little things I needed because I go to the doctor a lot and I take about twenty pills per day. I ended up with regular Medicare A & B. I had to buy separate drug insurance which shows that I would meet my limit and I would end up having to pay 50% of the retail price of the medicine to obtain, until I get to $4,300. Then the gov't will pick it up again. Yes, it sucks. Plus I pay a lovely premium for this too. Then there comes the medigap/supplemental insurance. It is insurance to help cover things that regular Medicare doesn't fully cover. I had to call about 30 places, spoke to 30 people (no kidding), which in the end - talked to about 50 people approximately for three weeks hounding me about their product and how much it would cost and all the little things, like ratings, the costs, etc. I went with a person, even though he was a company man - I went with this company because I felt really comfortable with him. The only weird thing is that he could never really send me actual confirmation about my policy over the internet???? I had to scan and send my Medicare card to him via e-mail. He stated "Privacy Issues" and that we didn't have secure e-mail. Then that kind of scared me. Does that mean that when I sent my Medicare card that other people would be able to see it? Or maybe they are being very cautious. I don't know. I hope I made the right decision. After everything, I even used a whole journal book from the calls and all the notes that I had to write, plus all the calls that I missed and I had to return calls to those people. Then we have my text messaging and e-mail. I guess we get all comfortable with this technology, soon we won't have to do anything, nor even move. It is crazy how far we have come in the last five years. I wonder what the next five years holds for us? All I have to say -- if I was an elderly person going through what I went through, I don't know how they do it or if they even understand it??? I think I can rest assured right now (Please God!) that everything is in place and that I will just have to deal with going to my doctors and everything just as usual. But after weeks of research, sleeping, discussing, - almost losing my mind. I think that I have some big relief! I am hoping to have a good night's sleep and not deal with that anymore! Yeah!!

It has been a while...let me start slowly with my updates....

In the end, I finally got SSDI (Social Security Disability Insurance), thank you God! It just took almost two years to get it done. Now I am finally on Medicare, and that is another story that I shall write about because it is a crazy system! I am a young person that can understand pretty much any written information. But going through the Medicare & You is a joke for an elderly person to do. I could barely grasp it after three weeks of investigating. Since I am in poor health, I have to get supplemental insurance, a/k/a medigap. Wow, the salesmen and the crazy calls and how many times that they call you until you finally make a decision and even then they still try anyway. My own family could not get a hold of me because I was on the phone so much that even my phone died and I had to put it on the charger station so that I can still listen and make comments. I swear it is like they are all after your soul!!
Enough of that...I promise to go through my craziness in another blog. Now that I am home. I have started to feel so much better. But don't get me wrong, I have my days, weeks...and so on...there are times that I don't even leave the second floor for maybe a week. When I do feel better, I can schedule to do one thing that day. Adding other things will just stress me out and my body isn't going to like and will let me know it!!! I have pain meds and stuff, but then I don't want to be the person that just looks like a zombie and it is questionable if I even know what I am doing or what others are saying to me. I am totally different. That strong woman has disappeared. I am scared and now it is to the point that I can't be really left alone. It greaks me out. I know that I have dogs and stuff, but I worry about home invasions a lot. I am home about 95% of my time and watching the news is not something you should watch when you are alone. These days, news is just BAD news. I have been really depressed and wonder if I will ever come out of it. I wonder if I am going to spend my life on three anti-depressants to keep me going. I am so insecure. I lean on my husband for everything, but - don't get me wrong. He is a good man. But is more of a monetary person, where I would love to spend the money and travel and enjoy our time going ANYWHERE. He would love to just buy a gigantic TV. It is pretty sad...I don't take a shower without him and if it has been a while since I got a shower, a bath would be necessary. Then I would have to have him be with me. I'm scared to be left alone. At this point, I am not even washing my own hair. Is that weird? Apparently not, because I was watching TV on People's Weirdest Addictions. That stuff is pretty intense. I guess my abandonment keeps reminding me that any day, my husband won't come home. We have been fighting about little things. And one of our new Years Resolution was to fight less. It is only January 6th. Yeah we are making progress on that one. Yeah Right!!! Then there is my daughter. I feel bad when my husband dumps everything on her shoulders to take care ofme when he needs to do something or go somewhere. I feel for her burden and I know that this isn't what a 17 year old wants to deal with. Unable to hang out with her friends, etc. breaks my heart. But I can't have everything, right? I just wont to prosper like everyone else about life. I need my husband at all times. He makes sure that all of my medicines are put out and to feed me and has to give me my medicine with food every morning. Some days, He's such a wonderful man. But most days, I feel the resentment. It is so thick, I swear I could cut it with a butter knife. I know his life can't be all wonderful, but we didn't know that this was going to happen. We just have to deal with things as best as we possibly can, right?

...everything falls into place...

Finally, things are looking up for us. If we didn't go to court and get a ruling...I would have needed to move in with a relative. Yes, we all know how that feels.
At this moment I haven't really slept at all. I was up at 6 a.m. and I believe I went to sleep around 2ish/3ish? I'm in a bit of pain, but nothing like a few things to help with mobiliity around the house. If I lay sideways, my left eye tears...and it just gets yucky. Then I feel like I have a cold. So I am trying the hardest not to lay down that way.
Hmmm...just right now I feel like I was back at work...calling, IMing, receiving text messages, going online trying to figure out everything for my family. I was just going to try to relax...that went out the door, quickly.
ahhh, okay I'm supposed to be trying to get travel information to go and visit my BFF with the whole entourage! It has been a long time since we've all been together. Who has ever used airplane miles? OMG, I never thought I would be so confused. I want to see how many miles it will take to book a rental car? As I dig around the website...maybe I'll have to call someone that actually has used their miles for anything. I've never used them. I just thought it was nice to collect miles, so why not?
Now I am losing my voice. Yes, I love that feeling, NOT! Today, I miss my friends. I can actually say that I haven't said that in a long time! I've been really depressed and I don't know what else to do...I just canceled one wedding invite, that I had said that I was going to go, but then my health came into play, then I canceled. I feel really bad and I will still send a gift, but now I'm wondering if we should go still? I will just buy a gift in case we go or not - then we will all be set, right?
My Husband has a doctor appointment this afternoon. He never goes to the doctor, but since things are lightening up on my end...we are going to see what's buggin' - you know what I mean. He hasn't been the most pleasant person. And I know the person I loved is somewhere in that mess. I know that he had some issues because of my illness and I thought he took care of it. Apparently, he said something along the lines of ... I'll talk to the doctor and we'll talk about it later. Hmm...I want to go along. But no doctor wants to hear from someone's wife on how their patient feels. Yes, I have too much information on how to deal with an office visit. I guess I try to do the same thing with my daughter...but then again, as a minor, I have the ability to speak to her doctor and be in the room when they go through their exam. Who knows?? Maybe he's having his mid-life crisis. Ahhh, let's hope not b/c I don't think that I will survive one right at this moment.

finally...

Finally, I got Social Security Disability. It only took a little over two years!! This will save my family home. I have been praying so much. Also, asking prayers from all of my friends and family. At the hearing...I wasn't even sure if it was really approved because the Judge said something...I couldn't really hear, but I know the Judge asked all of us to leave the courtroom. As we left, my attorney turned to me and hugged me and said that we won!! I didn't want to get too excited until I see physical writing that I was approved. My order came today, six pages long, finally at the end - it claimed me disabled. Thank you Lord!! Now, I have to deal with the paperwork to get myself on medicaid and medicare. Which will really relieve the pressure on our finances. I don't even know what to do or say or anything. Ugh, I took a large, deep breath and let it go. It feels light...something lifted from my body, my mind, pressure has been relieved. Thank you, I will keep you posted.

Up In The AIR!!!

Right now, I am awake, while everyone in this house is sleeping. I am having the weirdest bleed pattern ever. Generally for years I didn't have the menstral cycle at all. My daughter is a teenager now, so everytime she gets her period, I get all the symptoms of having a period...then I spot...then it goes away. Today is a WAY different story. I am bleeding so much that a super tampon, liner & I barely lasted 2 hours. Now, I just decided to use the super tampon plus the night pad, so it is a little bit longer in the back, to get more coverage. I folded the towel twice over and it is under me now. I think I had too much sugar today and I can't sleep. Although I am super tired. I don't know what to do. I feel like I could collapse any minute. I have been praying for many things these days. But more than usual. The stress of having a life, having a family, then me-mom.

I'm worried about insurance coverage that I just got through my husband's work. I don't know where the brochures and stuff is located. So I need to go online, while I am fully coherent and read through a whole bunch of RULES. I just don't want to panic about coverage, etc. You know what I mean.

The next thing...ta dah!(yeah right!) SSDI. I am trying and it has been so ridiculous and they keep dragging their feet. We are holding on as long as we can. This financial burden isn't good for our marriage. I am sure my husband has many frustrations, but he is so understanding nowadays. But we have our moments. I guess if there wasn't any fire, we would be blown out quick. We are totally opposites in almost everything. But we compromise as much as we can. So basically these last or almost two years of unemployment, dissolution of every thing, sold anything of worth, even cashed out all of our savings. This is it. If it doesn't get decided in our favor I don't know where that will leave us. We won't have money, no savings, definitely bills!!! The last thing I heard from my attorney was on Tuesday--she called SSDI to see where my file is--it is on the decision pile. That is great news. Now we just need to have them to decide that I am eligeable (sp?) okay let's say my pain meds are kicking in a little bit which is finally some relief. I'm praying, crossing my fingers, please think of me! I need everyone to help, please.

How it Affected My Child

When Brittany was younger, there were times where should would be waiting in front of the house b/c she forgot her key, but basically it meant that I probably was in a hospital somewhere and Brittany would wait for someone to get her, if I could get through to someone. Then it became all common. The worse part was that she was starting her teenage life, and you know how kids want to be cool and not wear a jacket?? Wearing ridiculous things for whatever reason, but if I was sick on any day and that could be today, tomorrow or a week later. So if it was snowing, she would sit on the step in front of our house with her instrument and wait. Generally I would pick Brittany up from school and if I didn't and didn't get her a message, she would start walking. If I wasn't going to come, Brittany's dad would come home to take care of her, but I would be hospitalized down in Denver a lot, which meant he went down to Denver to be with me. From a very young age, Brittany grew up because Brittany had to take care of me, which saddens me, but what can I do now? It has already happened. When my husband wants to go up snowboarding, Brittany would have to set the alarm at 6:30 on the weekends to get up to feed me and make sure I took my morning pills. I have slow release pills and it has to be constant in my blood or it would just be painful for a while and the other times I would be so zoned. So it had to be taken at the same time everyday.
(*name was changed for anomity purposes)

Happy New Year!

Happy New Year!!! I know it has been a long time since I have blogged. I have been crazy busy with all of my doctor appointments and my continued battle with social security. I understand that I just have to be persistent, and I shall be awarded at one time in the future (We hope)! Today was a good day for me. I actually got out of bed and took a shower, which is huge for me. I even left the house which is very uncommon for me. I went shopping @ one of my favorite stores. I was so disappointed...I had ten dresses/items to try on. Not even one looked okay. I just looked like an overstuffed sausage. It was just horrid!!! This isn't a New Year's resolution, but I have decided to at least lose 10 pounds. I want to be realistic about losing weight. My husband wants me to lose 20 pounds & my daughter seems to think that I can lose 30! They are both nuts! There is no way, I just want to be realistic so that I won't be so disappointed. I am sure some people know what I mean, right? I just called my pharmacy because I just realized that I was supposed to pick up some meds on Monday. I have supposedly already met my co-pay because I was taken to the hospital for an emergency and I am almost positive that I am probably going to get a huge bill that will cover my high deductible. I was trying to avoid that, but what can I do? I asked not to be taken...but of course they would not let me go. After that incident, I now have to be religious on wearing my Medic Alert jewelry. I was totally passed out and was unable to speak. I guess I just missed a few minutes or up to half an hour of time. Of course there were many questions. But after I woke up, I was able and coherent to say my husband's work number and that I had Lupus. Of course they checked my blood sugar...but I ate breakfast and lunch already. So they gave me some medicine to empty out my stomach. Ugh, this is the second time that I have had that done. It is just awful and pretty gross. Oh well, happy new year to everyone out there :)

home is where the heart is...

Home is where the heart is...until you run out of money. We are facing foreclosure on our home that we have had for almost 10 years. I was very upset. We can sell it, but I don't want to sell it. Waiting for disability seems to be forever! How can anyone afford to wait for disability? We pay into it for all these years until we need it one day and it takes this long just to tell you no. I know I made several mistakes my life, but my life hasn't always been great to me. I am paying for my pain for not working. I'm going to lose my home. I can't make a partial payment, only a lump sum. I don't have a lump sum. I just want to save my home. How am I going to go on? What do I tell my family? Please God help me. Help me save my home. Anyone and everyone that reads this, please pray for me.

just another day...

Just another Monday...isn't there a song with that phrase as a chorus? I have a full week ahead of me, also the fact that taxes are due Wednesday. I need to file for an extension, but I have yet to gather all my numbers together. Wonderful, huh? We have had some good and bad news. One of our cars was hit and will probably be "totaled" I'm not too sure if that is good news at all. But now we are down to one car. It was just a long weekend. Easter: our annual egg hunt was successful and both dogs seemed full afterwards. Our older dog was slow on the egg hunt this year, hopefully it doesn't mean his time is limited, right? We did watch Marley & Me and my daughter cried at the end. Everything was due to natural causes and it wasn't like something tragic happened. My daughter played for two teams this past weekend. She played for the freshman team and the JV team. Tuesday there are two games, but one is far away and one is at home. I'm not sure which one she will play and if she will skip her symphony practice. Everything is kind of up in the air right at this moment. My daughter is getting a used clarinet from her symphony. It is such a blessing because we have needed one for such a long time now.