Well, we found this great handicap accessible duplex in Southern Utah because the doctors have been advising my cousin, Carol (who has had numerous strokes and has severe Rheumatoid Arthritis) to get a lower level, one level place so she is able to get around easier. Now the state has cut the funding to pay for the move. WTF? Instead they would rather let her stay even more homebound since she can't take her wheelchair down 3 flights of stairs? I just can't believe it! Disability services swore they would pay for the move and any deposits necessary to get a more accessible home. I have been hunting for a place in Southern Utah where it is warmer and near all of the National Parks she has dreamed of seeing. I just knew she would fall in love with the opportunity to drive her power wheelchair out the front door and enjoy the amazing scenery not to mention her new found freedom. Now I have to squash her dream and tell her sorry but we can't afford to pay for the move? This sucks!
I have been her caregiver since 1985 when she got severe rheumatoid arthritis overnight. She went from a very active young woman to relying on others to care for her personal needs. When she has her strokes in November 2003, I started working temporary jobs so I could take off as needed to care for her. I never mind being a caregiver but its times like this where I feel hopeless. I am the only family she really has and now that I have rheumatoid arthritis and Menieres disease, I am losing the ability to provide for us. This duplex would have been a place we could live for the rest of our lives.
It's a sad day in our country when people end up on the streets because they must make the choice of paying for their medication or food. I know you have heard that before but I am here to tell you that is how it is for us. We pay for the things our medical coverage won't pay for, utilities, rent, gasoline, car insurance, medications that the insurance deems unnecessary and so on. That leaves no money for emergencies or things like paying for a move. Why must places charge the huge security deposits for a rental? $750? Yikes! They won't even split it up. Then $300 for a utility deposit just for renters? I know there are some people who do not pay their rent, utilities, etc. but one would think your landlord or other utility company could simply vouch for you so a large deposit would not be necessary. I guess that is too easy? Okay so now we are up to $1050 and that doesn't even include renting a truck. Why do things have to be so hard?
Okay, a friend suggested that I ask the online folks for help so here I am asking ... no begging for help with enough money to pay for our move. Is there anyone out there who can help? I admit we don't have the extra funds to pay people back but I swear to you all that the money would do is allow us to follow our dream of having an accessible home and possibly a healthier life due to the warmer weather.
Well, there is my plea. Take it as you may. If you can help, please send any money through PayPal at jmladyhawk@hotmail.com That way you and I have an accurate receipt and can properly thank you.
- Mood:
frustrated
My Menieres is back. I had some better months with fewer symptoms after my surgery but then my symptoms came back with a vengeance. It sucks having this disease and it sucks even more that there is no cure. Now to top it all off I have been diagnosed with rheumatoid arthritis. I have watched my cousin and best friend suffer with the illness for many years and I do not look forward to dealing with this. They started me on Methotrexate which is pretty harsh stuff but it is a low dose compared to what they give cancer patients. So far I don't see much relief but I have only been on it for 2 weeks now. I only take it once a week so not sure when I will know if it is working but time will tell I suppose. My hearing in my right ear is worse so I am not thrilled about that. I will learn to cope. I always do.
On top of all these health issues I am being reviewed to see if I am worthy to be getting Medicaid Disability. LOL Now I get to jump through the hoops just to prove I am still suffering from a Vestibular Disorder that as no cure. It's interesting that our State can make medical determinations for people who are getting state medical aid when they don't even have a clue what this illness does. Did I ever tell you how I had to send them info on this disease? WTF? These are the people who decide if I truly have dizziness, vertigo, hearing impairment, brain fog, and all the other crappy symptoms this disease causes. What a freaking crock.
That's all for now. Just wanted to post that I am alive and still kicking.
- Location:In bed
I do have something wierd going on with my lung function but hopefully it can be easily controlled. My lung function is not very good so my allergist/ENT is not very pleased. I am seeing a pumonologist on Aug. 18th so hopefully we will figure out what is going on. For now I am on a new steroid inhalant and using my abueterol 3-4 times a day. Getting old sucks! LOL I refuse to let that slow me down now that I am able to be outside more. I am way too fiesty to give in that easily. LOL
- Location:Home watching tennis
The surgeon is really cool and worked for a time at the University of Michigan and the Michigan Ear Institute so he knew everything about it and said the right things that I felt confident about him as a surgeon. I have to stop my IB 800 and herbal remedies for 2 weeks before and after so my arthritis and Meniere's symptoms will be bad but I'll swap that for my surgery any day.
My cousin, Carol got out of the hospital at 2 pm on the 22nd so we went straight from there to the surgeon's office. LOL What a pair we make. LOL She has congestive heart failure but at least it's the reversible kind. She also has a urinary tract infection. We also think she had another minor stroke due to some new weakness on her right side. I have a call in to her Neurologist to see if they can order another MRI. She is doing okay on the new meds so I am pleased about that. She should be doing a lot better by the time I have my surgery.
Thankfully other than Meniere's and my severe hearing impairment I am healthy so this surgery will give me my life back. I will still have to watch my sodium intake, manage my many allergies but all in all I will be doing so much better.
I am falling asleep so time for bed. Night everyone! Thanks for all your support!
I have been enjoying playing Sims 2. I can't play most of my games since the action makes my dizziness worse. Sims 2 is slow an I control the pace so I can at least play that now and then. I admit some days I make people and then torture them just to make me feel better. LOL Better in a game than in real life. LOL
My Meniere's is pretty bad. I am trying everything I know how but I am getting very little relief. It truly sucks. I can take a whole 5 mg of Diazepam but I become very out of it and Carol has lots of trouble waking me. She has taken to spraying me with a plant water sprayer. LOL It works most of the time. I just hate feeling so out of it. It appears to be kicking in so goodbye for now.
Have a safe and fun New Year's! May your New Year bring you everything you are hoping for.
- Location:Bed
- Mood:
lethargic
I am not doing very well as far as my Meniere's goes. Just very dizzy, migraines and way off balance. My allergy shots are going okay. My food allergy results came back and fortunately I am only allergic to shellfish, nuts and chocolate. I already knew about the chocolate and nuts since both give me migraines.
The news is talking about the FDA wanting to force processed foods to lower their sodium. I would be thrilled since I have to avoid processed foods especially soups, chili, hot dogs, salami, etc. because they are so high in sodium. I pray they will force the issue. People who want more salt can just add more from their salt shaker. I can't even own a salt shaker. LOL
Well, I had better catch a quick nap and ice my head to get this migraine to calm down. We really need to go get some groceries before tomorrow.
- Location:In bed
- Mood:
sick
We had a nice Thankgiving with a family in our church. There was tons of food but I had to be careful what I ate. I lasted about 3 hours before I started to get a migraine so they brought us home. We had a small precooked turkey breast here at home so we ate some last night. We are about to have some now for lunch.
If I feel up to it later I will put the outside Christmas lights. I still have my migraine so that may have to wait. I overdo the lights but I just love Christmas lights. LOL Next comes my Christmas village and train. The village lights up and the cat lays in the middle of town every year. LOL She even swats at the train now and then but mostly she leaves it alone.
I better get some lunch so we can clean since our Avon lady is coming over. LOL Bye for now and take care.
I got on the phone and made a dentist appointment to get all my dental work done since they won't have dental next year. Then I scheduled my stress test to check for blocked arteries in my heart. This is to follow up on those abnormal spots on my brain that were most likely small strokes. Then I scheduled an appointment with my ENT! I need help with dietary changes and how to monitor my salt levels. I am tired of having constant dizziness and imbalance. The brain fog is also extremely annoying. My ENT can also do the allergy testing to find other triggers including food, plants and environmental. That will help me avoid triggers wherever possible. Once all that is done I can see if avoiding my triggers and the dietary changes help ease my symptoms or if I will be applying for Social Security Disability.
My apartment manager is going to clean our air conditioning ducts to help with the dust. Then we will have to get some air filtration systems. We already use allergen filters in the a/c unit and that use to help but when you live in a place for 20 years the air ducts need to be cleaned. Yuck! I hate to think of all that crap we've been breathing.
In other words, things are looking up for our household. Hopefully things will stay that way for a while.
- Location:Home in bed
- Mood:
happy
- Location:Home
- Mood: relaxed
- Music:Watching Smallville
I joined a Meniere's Support group and have been learning a lot about my illness. I am one of the severe cases. Aren't I lucky? Everyone is great and very supportive when one of us is having a bad time of it. Most everyone is on disability and those that are working are realizing their illness is causing them to miss too much time to continue working. That is somewhat discouraging but I am not very surprised really. I have been researching this disease for months now and am aware there is no cure for it. I have already lost more of my hearing in the right ear. My left ear is starting to have a ringing in it too. My Meniere's friends tell me it is unfortunately common for Meniere's to eventually move to the other ear. Hopefully it's nothing and will go away.
Not much else going on here. My sister who was keeping me from seeing the kids and avoiding me like the plague has all of a sudden started calling me almost daily to see how I am feeling. It shocked me the first time but I was polite and didn't say anything like "who are you and what did you do with my sister?" LOL I even got to talk to some of the kids too which was fun. I really miss playing with them but my cousin usually drives and can't handle all the kids so doesn't want to go over. We do want to have a few of them over for sleep overs but my sister is still avoiding that. One thing at a time I guess.
- Location:In bed
- Mood: mellow
I am having a 24 hour EEG on Monday. I have to wear the head wires and mini monitor for 24 hours so that should be loads of fun! They are trying to rule out any seizure activity. I am NOT leaving the house until it comes off at 1 pm on Tuesday. Then I have to run home, shampoo my hair and head over to the ear doctor's at 4:20 pm. At least then I will be done with all my appointments for the medicaid appeal! It's amazing how pathetic the USA health care system is! If you haven't seen Michael Moore's new film, "SICKO," then you REALLY should. It compares our pathetic system to health care systems throughout the world. It's VERY TRUE!
There is not much else going on here. I do have a few hours here and there when my vertigo is a bit more manageable so we run around and fit in as many errands as we can! Then I am usually down again with an attack. It's VERY frustrating!
I have found some comfort in listening to Inspirational music on a new radio station here in SLC. It's 94.5 The Oasis and it truly is and Oasis since it can take you away from real life issues for even just a little while. It also reminds me that God is never far away even if we forget sometimes. If you have broadband, you can listen to the radio station on line:
http://www.975oasis.com/
I hope some of you enjoy it as much as I do. That's all for now. Peace out.
- Location:Resting
- Mood:
disappointed - Music:Mercy Me
Sorry I wasn't around but I had a major Meniere's attack. I have learned yet another trigger for attacks ... READING! That sucks too since I love to read. I guess it's the eye movement but man did it trigger a MAJOR attack! I did get to read all of "Harry Potter and the Deathly Hallows." I LOVED THE BOOK! It was everything I had hoped for and more! It was clear that there would have to be some deaths during the final battle with Voldemort. It was sad to lose some characters but it had to happen or it wouldn't have been the most incredible battle since Book 5.
Like my new icon? That is Skeet Ulrich from CBS Jericho! Please watch it! We worked hard to bring the show back after CBS cancelled it so we need everyone watching to give it a fair shake. The show is excellent. Very serious stuff I will warn you. Go to CBS.com and watch past episodes and you'll see what I mean. It was my favorite show this season beside Heroes!
I am anxious for my hearing on August 2nd for Medicaid. I will hopefully get the medical help that I need so I can get well or at least as well as I can be. I do realize Meniere's is not cure-able but the other issues they found in the process of diagnosing my severe vertigo are cureable. I will keep you all posted.
Now for a quick nap. Later!
- Location:Bed
- Mood:
tired
I would use my Elvish name. My mother is Joan too and I always hated being little Joan. LOL Besides Alatariel is so different and beautiful. Joan is just too plain.
- Location:Utah
- Mood: relaxed
Life has been the usual roller coaster here. I am still busy fighting Medicaid to get health care coverage. My vertigo comes and goes but is always there to some degree. The ringing in my ears is VERY annoying but I am getting use to it. My hearing aids are still working well except for speech and certain words. I plan to take a class to try to hone that skill a little more. There are free classes at the Deaf and Hard of Hearing Center here. I need to take sign language as well even though I have learned some of that.
We had some company from Arizona visit for 5 days. All went okay except that the air conditioning broke for 36 hours. Finally my cousin, Carol started examining the thermostat and saw a few broken wires so I ran over to Wal-Mart and replaced it and the air came on. Woohoo! It's a good thing cause our manager never called me back so had no intention of fixing it for 3 days. Of course now we are looking for a new apartment. I am not going to have to worry about that again. Plus we really want a 3 bedroom. We found a really nice townhouse for $925 so we will check with Housing and see how much of that they will pay and see if we can afford it. It has loads of space so I really hope we can pull it off.
Oh I fell on my kneecap while walking the other day. It's this stupid vertigo thing. Thankfully I didn't break anything. My knee is just swollen, bruised and a bit sore.
Not much else new here. My Medicaid hearing is on August 2nd and by then I will have had the pysch evaluation and another neurological exam. They think a Neurologist handles Meniere's! LMAO That tells me they have no clue what the illness is so I got them each a Meniere's pamphlet. I realize I am going to have to educate them on what exactly Meniere's is. My review worker is excited to learn about it and even looked it up online. I am looking forward to making her an expert so others won't have to go through the same delays I have. I applied over a year ago so this is beyond ridiculous. Let's hope everything goes better once the examinations and hearing are over.
- Location:Chilling on the recliner with ice on my knee
- Mood: relaxed
Orlando is wonderful as Will Turner and OMG is he ever HOT looking in this film! The previews do not do this film and his role justice. Keira does a wonderful job too! She kicks some serious arse in this movie! LOL Johnny is Johnny. Captain Jack is as crazy as ever. We will probably go see the movie again this weekend if possible.
Healthwise I am doing okay. Dizzy but able to get around a little s long as I have some support like a cane or walker. If I am up too long, then I need to rest more or my head feels like it will explode. The doctors love to say it is a headache or migraine but it is swollen and the pressure is incredible. That is not a headache or migraine. It's clearly inflammation. DUH! LOL
- Location:home
- Mood: satisfied
We had the Medicaid pre-hearing and it went well. The head investigator for the state felt there was more than enough evidence to reconsider my application. She was shocked that it had been denied based on the records they already had. They will set a hearing date anyway in case the review board drops the ball as she said. I am hoping it is just approved soon. I am so sick of rehashing the same thing over and over. I just want to get all the testing I need for the inner ear disorder and the bonus heart issue they found in the process of testing me what little they have.
Today is not a good day for my vertigo. My head is swollen so my right eye is swollen partially closed. It's weird when that happens. It's like pressure is building in my head and it will explode. That's the only way I can describe it. The darn doctors keep trying to call it migraines but I tell them over and over that I DO NOT HAVE A HEADACHE! Doctor's can be so very clueless sometimes. It is clearly some sort of inflammatory process. It's not rocket science to figure that out ... then again maybe I am just really smart. LMAO
Other than that, things are going fairly well. Carol just got approved for housing/rental assistance and that will REALLY help us out. We may actually be able to take a few days and go to the southern Utah in the fall like we have dreamed of for many years! Imagine that ... a real vacation? It sounds like a dream because it has been for so long.
Pirates 3 opens tomorrow! WOOHOO! Carol and I can't wait to see it!
That's all for now. I hope all my friends are well.
- Location:on sofa
- Mood:
pensive - Music:watching CSI
Other than the usual red tape I am dealing with to get medical treatment, things are fairly quiet. Carol is healthy and her brain injury case worker came today. She will help us find new housing that is more handicap accessible. In the meantime Carol qualifies for rent assistance so that will help us save some money so I can pay off my dentist and doctor bills. The manager of our complex told us that her dad is working on selling the apartments as condos so we would have had to move eventually anyway. We have been here since 1987 with no rent increases so we are very lucky to have had this place. They let us paint and do anything we wanted. It will probably be different in a new place but we told her to look for a house to rent. That way we won't have to deal with neighbors above us. Of course that means getting an alarm system but it will be worth it to have more room.
My sister actually called and asked how I was doing. I nearly fainted. LOL I figure she talked to my mom and she told her all the problems I have been having with my dizziness and nausea. She had to watch all 12 kids alone the other day because some of her nannies are on vacation. LMAO She was freaking out because the kids totally take advantage of her. We did discuss having the kids for a sleepover and her concern (or so she claims) is that I will have an attack while they are here. I told her it isn't like I have seizures or thrash around on the floor or anything. LOL I just get dizzy and stumble around. The kids don't care since they have seen it before. I will talk to her tomorrow more about them coming over. I want them over night for Friday and Saturday so it's worth the gas money. :D
Our Orlando Bloom group is turning out to be pretty fun. All of the members are supportive of each other and feel comfortable enough to post anything they want without anyone giving them crap. It's a small group but we all like it that way. If any of my friends want to stop over, feel free to join.
http://movies.groups.yahoo.com/group/OR
- Location:In bed
Nothing much going on here. I am much better as far as my throat goes but my Meniere's is a constant pain in the butt! The dizziness is VERY frustrating. Even with a walker I walk sideways. I hate feeling pukey from all the dizziness too. I really want my life back but there is no sure for Meniere's so I guess I will just have to learn to deal with it. It's going to be very difficult that's for sure!
I still haven't been approved for medicaid so I haven't been able to follow up on the spots or mini strokes that showed on my MRI. I am just taking an aspirin a day and praying I don't have a worse stroke while I wait for medical care.
I sleep a whole lot so the dizziness doesn't get te best of me but then I have no life but I am hoping balance therapy will help. I start that on April 30th. Sorry to sound so down but life kind of sucks right now.
- Location:In bed as usual
- Mood: depressed
My nephew, Jordan called to ask if he and Bethanie could sleep over tomorrow. I told him that would be fine as long as it was okay with his mom. I also told them to find their swimsuits so we can go use the Lions Rec Center/club pool so he said he would go pack their stuff. Then I just got a hunch to call my sister to check if this was okay with her. Of course she said no sleepovers for any of the kids right now. This is her way to keep me from spending time with them. She knows I can't spend the gas money to run back and forth just to do day trips. I am really sick of her crap especially when she is always making excuses why they can't sleep over with their favorite aunt. I can't help they like spending time with me more than her. LOL I feel the same way and would much rather spend time with the kids than with my sister. LOL I guess I will just have to wait until I can take them bowling or something. It will be a while unless I just happen to have a really good day with my Meniere's which hasn't happened in a while.
I do have good news though! Vocational Rehab has approved 6 balance therapy sessions and will approve more if needed! I am not sure how the therapy works but I was told to be sure I have a driver because I will be extremely dizzy/off balance after the sessions. Oh joy! It will be worth it if it eventually helps me have less attacks. I would love to get my life back so I can at least work part time so I can have some money to take a nice vacation and eventually do stuff with the kids.
That's all the news for now. At least there is some good news for a change. :D
- Location:In bed
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