Wishing all my SS friends happiness and good health!
May 15, 2016
Well, much has happened since I last posted an update. Late in the month of January, my right foot, which I'd had problems with in the past, flared up again. I developed a wound on the tip of one of my remaining toes and two large blood blisters on the bottom of the foot, which broke open and bled all over, and the wounds left from the open blisters both melded into one, very large wound covering over 3/4 of the bottom of my foot! I was very quickly started on IV antibiotic infusion therapy, twice a day, for 14 days and also sent to a wound care specialist, who put my right foot into a special boot, called a cam walker boot, to help with the healing process. There for a while I was having appointments twice a day, every day, including Saturdays and Sundays, and some days I would have three or four appointments!! I was instructed to stay off my feet as much as possible. I finished the infusion therapy and continued going to a wound care specialist for ongoing wound care. Well, after going to wound care for over three months, I was finally declared healed as of May 9th.
At the very end of February, I was stepping sideways through a doorway in my house and somehow broke my left foot in the process! So, for eight weeks I had to wear a cam walker boot on my left foot to get it healed up as well. Consequently, for a while, I was wearing cam walker boots on both feet!! Needless to say, it was extremely difficult to get around that way, when I did have to be up for some reason. I just stopped using the boot on my left foot as of last Wednesday, when I was told that it was healed and I didn't need the boot anymore. I found out towards the end of all this that I need to have special shoes made for my feet. Not only am I diabetic and could potentially suffer from continual slow or non-healing wounds on my feet, but my right foot, due to a condition called Charcot foot or Charcot arthropathy, is much bigger and differently shaped than my left foot. I have an appointment with an orthotic clinic this next week, so hopefully they can get the customized shoes I need made for me, and I can finally wear something close to normal shoes on my feet. All the sitting/laying around I've had to do has gotten me so seriously out of shape that I worry I won't be able to bounce back at all. I am, however, planning on getting out and going for walks as soon as I can get my new shoes so I can hopefully at least get back into a little better shape.
I am very sad to say that my big beautiful boy, Scout, passed away on March 4, 2016. He died exactly one month short of his 12th birthday. He fought very hard to stay with us as long as he could, but the cancer won out. I still miss him very much every day. Losing him has left such a void for me that I don't think I can ever fill, and life here is diminished without his presence. I will love him forever and am so looking forward to the day when we can be together again.
I finally got approved for in-home services to come and help out with all the various activities of daily living. My insurance company delegated 15 hours a week, which is divided up into three hours Monday through Friday. Having the in-worker to take care of the majority of the chores/errands has been such a big help I can't begin to tell you!!
I think that's about it for now. Probably some details got left out, but the highlights pretty much are all there. Anyway, until next time...
January 4, 2016
Well, it has been about three weeks since I started my dog on the herbal compound. I have been diligently giving it to him twice a day as directed. There for a while, it seemed like maybe the stuff was working because I began to notice that he didn't seem to be drooling as much, and sometimes he didn't seem to have the bad smell on his breath or it wasn't nearly as noticeable. In one of my conversations with my friend who took us up to the vet at K-State, I told her that I had wondered if the reason for the decreased drooling could be one of two things - either the herbal compound is working with the tumor being decreased in size, allowing Scout to swallow his saliva more effectively, or the compound isn't working, and the tumor has only grown in size thereby holding back more of his saliva. I've also begun to notice lately that he has had more bleeding from his mouth, and he will spend anywhere from 5 to 10 minutes standing over his water bowl trying to get a drink. And, being the good dog that he is, he won't drink out of the same bowl that my other pets drink out of. I know it's probably not the reason, but I'd like to think it's because he is being respectful of the other ones here and staying away from that water bowl so they are not forced to drink what now always ends up being nasty water once he has gone for a drink. One night over this past weekend, I woke up to find the water in his water bowl stained very pink, meaning he had bled yet a little more. Well, I became alarmed and called my friend to talk with her about it. She said she would see what info she could find out about it and, in the meantime, I was going to do a little Internet research myself. I did find out that tumors of the kind he has can and do break open from time to time and bleed. I still do not know why he takes such a long time to drink water. When I watch him drink, it seems like the water level doesn't ever go down or not enough to really notice. I'm beginning to think the tumor has invaded one or more of the muscles in his tongue, and the tongue is losing its ability to move the water to the back of his throat where he would then swallow it. He does have a little trouble chewing his food, but his appetite is still just as strong as it ever was. I spoke with my friend on the phone last night, and she told me that, after doing some research, that the herbal compound I am giving him will cause the tumor to temporarily increase in size and then burst and start to break up, which is what is supposed to happen on the essiac. I told her that I wanted to contact people who have had experience with using the compound, and she suggested one of the companies you can buy it from as well as her vet up in Omaha. She told me that, if I ended up speaking with her vet, that vet might want me to bring Scout in to have her take a look at him. I told my friend that I don't know how I would get up there since the vet is in Omaha, which is a good 5 or 6 hours from here. Well, my friend has offered again to drive us up there. I tell you, this friend has become a guardian angel for us. So, today I will be making some phone calls to find out if we're on the right track with giving him the compound. Depending on how things go, we may end up going to Omaha so my dog can be seen by my friend's vet there. Again, thank you for all your prayers and support. After today, I will no longer be a gold member as my financial hardship has made it impossible for me to continue the membership. I probably would otherwise be very saddened by that fact, but I am so focused on getting my dog to better health, I have to let other things go. I sure had fun being a gold member, though, and I will (eventually) miss it terribly.
December 18, 2015
This is an update on the status of my beautiful dog, Scout. The biopsy came back positive for melanoma on his tongue. The vet said that, while he opted not to submit the lymph node samples to the lab to cut down on cost, they did look at them under the microscope there in the clinic, and they did not see any evidence of spread even to the lymph nodes. He said that this type of cancer is usually very aggressive. What really puzzles me, though, is I am quite sure that my dog has had this for at least a year (if not longer), and yet it has not spread anywhere else. Anyway, the vet said that, without surgery, the only other offer in the way of treatment would be chemotherapy. I told him that I would have to think about it and also see if I could raise the money for that because I simply do not have it. During our trip up to Manhattan, my friend who took us up there told me about a type of herbal extract that supposedly does wonders for both dogs and cats as well as humans. The mixture was developed by a Canadian nurse, Rene Caisse, and was named "essiac," which is her last name spelled backwards. So, after long and careful thinking, I ultimately decided not to go for the chemotherapy but to try this mixture instead. I started giving it to my dog last Sunday twice a day. From the testimonials I read online, it sounds like I will have to wait at least two weeks before I would notice any change. The claims are all saying that this stuff really works. I sure hope so because I feel like it's a big gamble, but the only other option was chemotherapy, which would've only extended his life by a few months. If this stuff works, he could live well beyond that and he would not have to suffer through any side effects that he might have gotten from the chemo. He really doesn't fuss too much about it, and the squirt from the syringe only takes a second. I then just love on him a big whole bunch, which he really enjoys. Keep him in your prayers that this extract does what they claim. From what I understand, he will have to stay on it the rest of his life, but it's such a small price to pay it's not even worth mentioning. And there are many people around town who know and love him, too, and they would be thrilled to know he's going to be around for a long while. Thank you so very much for all your prayers and support.
November 27, 2015
PLEASE PRAY for my wonderful dog, Scout!! As incredible as it may sound (after all, if I were someone else listening to/reading these entries, I wouldn't believe that so much could happen to a person myself either), my beautiful dog, Scout, turned up with a very large tumor, suspicious for melanoma, on the back of his tongue! I have been just absolutely heartbroken and distraught over this that I just can't begin to express it! I had to take him to the veterinary center up at Kansas State University (K-State) in Manhattan, KS so they could take a closer look at him and run some tests, which included a chest x-ray, biopsy, and lymph node needle aspiration. The chest x-ray came back clear, so there has been no metastasis to his lungs, which is very good. The vet told me that the next step is to process the biopsy. If it comes back as cancer, then they will process the lymph node test to see if it has spread to the lymph nodes. He told me that, most likely to make sure they get all of the tumor, they would have to completely remove his tongue!!! Well, that was shocking, to say the least! However, after thinking long and hard about it, I decided that I am not going to have them remove his tongue, even if it means he won't live as long. In my heart of hearts, I just couldn't do that to him. While he might be able to learn how to eat and drink in a different way, he needs his tongue to help him stay cooled off because he has very thick fur and gets hot very easily. I have been getting a lot of emotional support from all the people here that know and love him. A former neighbor and co-worker of mine drove down here from Omaha so she could give me a ride to K-State to see the vet there. She and another woman who works at one of the local grocery stores here have also been posting messages on Facebook and other web sites they are members of to try and raise money for his treatment. If he goes through surgery (hopefully to remove just the tumor), it would cost anywhere from $2,000 to $5,000!!! I am now on SSI (Federal public assistance) and do not get very much every month. There is no way I could come up with that kind of money, and that's only for surgery. It doesn't include the cost for chemo/radiation. I am not asking for money here but only that you pray for him and for a way that I can get enough money for his treatment. If you have any questions about this situation or ideas on how to raise money, please send me a private message. Thank you for your prayers and support.
August 27, 2015
Well, I must say - a lot sure has happened since my last entry here. I was hoping to give just the highlights but, as usual, I get long-winded (or perhaps I should say verbose). I wouldn't blame you if you didn't want to read through all I have written here, but I do appreciate it if you do decide to take the time and read my story.
I had both hand surgeries, which did resolve the carpal tunnel syndrome issue for the most part. I do still have residual numbness and tingling, but it is much better than it was. I am, however, still having problems with severe hand arthritis, particularly in my thumbs, making it very difficult (if not impossible) to do fine motor activities. There are days when I can't even sign my own name!
Even in spite of the issues with my hands, I went ahead with my college classes. What made going through that college program possible was the fact that all my classes (except for the internship) were all online. I would not have even been able to attend college otherwise. There were many bumps, dips and all sorts of complications during my college experience with the program I was in, but I completed all of the required courses and graduated from the program. I also took and completed a certification exam to become certified in medical coding. Vocational rehabilitation paid for all the college tuition, books, fees, etc. as well as additional expenses that would have anything to do with my ability to attend classes as well as searching for a job afterwards. During the time in that college program, I eventually found out that I would not get disability or SSI. I would, however, later apply for it again, but I'll get to that in a moment.
I have also had issues with pain and weakness throughout my arms and into my hands as well as pain in my neck going up into my head and severe pain in the left side of my rib cage. I found out earlier this year, as a result of tests to determine the cause of these symptoms, that I have something called radiculopathy, which is the medical term for nerve root compression, in both my cervical and thoracic spine and a herniated disc that is the cause of the pain in my rib cage. And the nerve root compression is being caused by my diabetes because the diabetes causes restricted blood flow to the various areas of the body and, in this case, the blood supply to the nerves in the spine. The doctor who diagnosed me had me go through physical therapy and said that there are other treatment options, but I might not be a good candidate for those given all my health conditions. So, I went through several weeks of physical therapy (as many as my health insurance would pay for), but I got very little, if any, relief from my symptoms.
In going back through all my entries here, I noticed that I never spoke about an issue I have been having with one of my feet. For the past five years, I have been battling with an ulcer on the bottom of my right foot, which has been difficult, if not impossible, to heal. I initially injured my foot by blistering the bottom on a hot, summer sidewalk back in the Summer of 2010. I ended up a couple of weeks later getting it treated, and the foot was finally declared healed that year four months after it was injured. I was told that I would always have to make sure the resulting callus did not build up to cause more problems and that I would have to scale or trim the left over callus on a regular basis. So, for the next three and a half years, I would check my foot every night before bed and, if needed, trim back the callus, if it had built up any, and then put a band-aid over the area. Then, in January of 2014, one night when I was scaling/trimming the callus, it broke open and began to ooze and drain. Needless to say, I was saddened and disappointed about it and knew I'd probably have to go back in for more treatment. So, I found out the next day that there was a wound specialist doctor here in town. I called and made an appointment, and he began treating my foot to try and get it healed back up again. For basically a whole year, I would go in once a week or every two weeks and have him debride the wound and put special types of creams and ointments to help it heal. He even tried a special type of genetic material that is specifically designed to promote difficult-to-heal wounds. Yet, it seemed all we were able to do was keep the wound at bay and not get any improvement with it. As I mentioned previously, I had been attending a college program in medical coding. During all this time, I was still attending classes, going through my medical coding internship, receiving job counseling, attended and passed a certification exam and had begun doing job search. I graduated from the medical coding program in July of 2014, passed the certification exam in November of 2014, and later landed a job interview, which took place in mid-January of this year. Since the job interview was in Rogers, Arkansas, it meant an overnight stay due to the considerable distance I would have to travel. With Vocational Rehabilitation paying for my travel expenses, I packed a few bags, drove down, spent one night at a hotel, and had the interview the next day after which I drove back home. Just a few days after that trip, I noticed that my foot began to turn dark red and purple, especially around the area of the toe next to the big toe, and the foot and that toe became quite swollen. I thought to myself, "Uh oh. Looks like an infection." I called the doctor's office about it the next day and, because the doctor was at the hospital, they had me go there to meet with him. As soon as he looked at my foot, he said, "That looks BAD, really BAD!!!" So, they started me on IV antibiotic infusions every day as well as oral antibiotics. They kept me on the IV antibiotic infusions for about a month and continued the oral antibiotics after that. I even had to go in at one point, and the doctor did an incision and drainage to try and get ahead of the infection. Still, it did not yield, and I eventually ended up with the infection spreading to the bones of that one little toe, which I later had to have amputated. The surgery for the removal of that toe was back on June 25th, and I have been in the recovery and healing phase since then. As near as we can tell, the initial wound has finally closed up (although I still have a deep depression where the opening was), and the incision from the surgery is slowly healing. At some point, because the incision was having trouble healing, they ran some more tests and discovered that I had developed MRSA in my foot, and it was the reason for the difficulty in healing. They switched me to an oral antibiotic that is supposed to combat the MRSA, and it does seem to be working. The middle part of the incision is healed, at one end there is a tiny hole that now has a scab over it, and the other end has a longer opening, but it is also scabbed over. The drainage from the incision has almost completely stopped, so I think it won't be long now before the healing will be complete. Obviously, I have had to stay off my foot, but doing so has caused me to gain weight, have more back, hip and knee problems than I was before. I am having a lot of trouble walking due to all of this but try to get up and move a little (or as much as I think is safe to do so).
Last year, at some point, I decided to have my knees x-rayed because I've known for a long time now that my knees have been bad. After the x-rays were taken, the doctor said that I had very advanced arthritis in my knees, which I already knew. We did a series of injections, which initially helped but then the effectiveness became less with each injection. Back in March, after the infection in my foot showed up, the doctor treating my knees walked in during my last visit with him and he immediately asked me when I wanted to schedule surgery for knee replacement. I hadn't even had the chance to tell him about the issue with my foot and knew that he wouldn't even consider surgery while that was going on. So, I simply asked if we could try the injections one more time and then I would see about getting the joint replacement surgeries. Needless to say, I have not been able to see that doctor again and am badly wanting the surgeries now because my knees are absolutely killing me!!!!
Earlier, I talked about losing my claim for disability and that I later applied for it again. Once the doctor told me, after discovering the infection this past January, that I would have to absolutely stay off my foot as much as possible, I decided it was time to apply for disability again. So, I found me a different disability lawyer and submitted an electronic application in March. Since Social Security's response to my application to deny me disability came less than a week after the application was submitted, I am quite sure that they did not even look at any of the additional information that was provided to them. I informed one of the representatives from my lawyer's firm that I wanted to talk about appealing that decision, but I never did hear from them about it. So, since the application was not only for the disability (SSDI) and also included applying for SSI, Social Security processed that portion of my application, and I have been told that I now qualify for SSI. As anyone who has dealt with SSI benefits knows, I will not be getting very much - certainly not enough to live. If you have managed to read through my entry this far and you know of any money-saving tips for someone receiving SSI, I am all ears! Needless to say, because my monthly checks will not be enough to cover my expenses and my SingSnap membership is up for renewal on October 4th, I may not be able to continue it. If that happens, please know that I have thoroughly enjoyed my experience on this web site and will miss it greatly!! I think what Trevor and all the other people involved in making/running this web site have done is truly remarkable, and I am so very appreciative of the hard work and dedication they have all put into this to create such a positive experience!! I only hope and pray that I can continue to be a part of it!
Well, I think for now this should bring you all up to date on what's been going on in my life. I wouldn't be surprised if I left something out but, if so, that will have to wait until another day. Take care and thanks for stopping by.
March 30, 2013
Had second hand surgery back on Feb. 14th. As near as I can tell, the carpal tunnel symptoms are pretty much gone. Still having lots of problems with arthritis in both hands, especially the thumbs. Gonna see about getting a second injection in the left hand and get an injection in the right since they apparently didn't do it during the surgery like I thought they were going to. Started college classes and, man, what a nightmare it's been! Got the same instructor for two of my three classes, who also happens to be my academic advisor, and she is making mistakes left and right in this course, making it much more difficult for me to get through the material. Have to do a lot of writing exercises for the third class so thank goodness I had the hand surgeries. Otherwise, I wouldn't be able to do all that writing. Just hope all that doesn't end up hurting my hands anyway. Sorry to be so pessimistic, but I just can't get over how bad the instructors are. I'm already considering the possibility of transferring to a different school if this keeps up. Don't want all their mistakes and poor teaching to jeopardize my learning experience not to mention my career plans.
January 11, 2013
Had my hand surgery yesterday. Surgeon said everything went great. It was strange for me, though, not only because of my arm feeling like it wasn't even there but also because I was awake for the entire procedure! Yet, I found it very interesting and fascinating! The pain med prescribed for me makes me ohh soo drowsy so can't do too much around here. Tried to get the doctor to indicate I would need in-home care after the surgery so that voc. rehab would pay for it, and the doctor's nurse said she knew he would not do that. So, I'm left with no help here. In recovery, I was asked four different times if I had anyone to help me out at home and, when I replied that I didn't, each time that person looked at me as though they were wondering how I would EVER manage things by myself! I guess we'll find out. It would be good if I COULD figure out how to manage on my own since I have to do this again at some point for the other hand. Sure am feeling drowsy from all the pain medication, but I got to hang in there!
December 31, 2012
First of all, I want to wish everyone a very Happy New Year! I hope you all have exceptionally good things coming your way in this new year!
I finally have a surgery date for the first of the two carpal tunnel release surgeries to be done on my hands, which is January 10th. Honestly, I'm more worried about how I will get along with only one functioning hand after each surgery, even if the healing process isn't all that long, which may or may not be true in my case, being diabetic and all. Since I live alone, I don't have anyone readily at my disposal to help out should I need it. I have asked over and over about this to the doctors and nurses involved in my case, but they seem terribly unconcerned about it. Does anybody have any suggestions on how I can get them to realize I'll need help at home after each surgery? There are agencies in this area that do this kind of thing and, because the voc. rehab. I'm going through will pay for any services the doctor says is necessary, there's no reason why they shouldn't be able to hook me up with them.
There's still no word on the progress of my disability claim. It is now almost four years since I applied for it! You know, they've thrown parents in jail for being less neglectful of their dependents than this. And while we can't throw the federal government in jail, surely it needs to be held accountable in some way for this atrocious kind of behavior!
I am so very thankful for your friendship and the tremendous way in which we all support each other! For me, this web site takes social networking to a whole new level! May you all truly be blessed in 2013!
October 17, 2012
Update on my profile: The judge from my Medicaid hearing back in April did not rule in my favor and upheld the initial withdrawal of Medicaid by SRS. I had every intention of appealing the judge's decision but, after talking with a second lawyer about my case, I had to let the Medicaid go. Because of an existing family trust that still contained some land (thereby indicating I had a monetary resource available to me), that lawyer told me it would be in my best interests to let the Medicaid go and then sell off my portion of the land and use up the proceeds from the sale for living expenses until I ran out of that and then go back and apply for Medicaid again. So, that's what I did and am living off that now.
I have also been trying to get on disability. I applied for it back in January of 2009. After moving here to Kansas later that year, I figured I would have to start all over again with applying for disability. However, I was shocked to find out that I could just continue my original claim. So, I then got a disability lawyer here in Kansas. After going through two separate hearings, the judge at those hearings denied my claim. So now, my claim is on its second appeal and is being reviewed by an appeals council in Falls Church, VA. However, my disability lawyer has told me that, at this point, the chances of me winning my claim have dropped to only about 25%, but he has seen cases where the claim for disability was finally approved, even at this stage. So, I told him, since I had to sell my portion of the land and could live off that for a while, to go ahead with the second appeal.
He told me to contact the vocational rehabilitation program in this state to see if they could help me find some small, part-time job I could do. So, I started that process also. However, not only is voc rehab trying to push me for a FULL-time job but also, in order for me to complete their program, I have to go ahead and have the carpal tunnel surgeries done on both of my hands. My primary doctor is very worried that my hands are too far gone and that I will lose the use of both of them. She said, if a person waits too long to have the carpal tunnel release surgery done, that, despite the surgery, the tendons and ligaments in the hands will thicken and the person will not be able to flex and bend their hands and fingers anymore, rendering them totally useless. I'm just hoping I will manage to get these surgeries done in time. No dates for the surgeries have been scheduled yet. And I know that a full-time job is just NOT going to happen for me. I am too sick most days to be up to doing much of anything. I’m quite certain that, if they could see what I go through everyday, they would realize that, at best, I could only work part-time.
It’s hard to believe that I began my case for disability almost four years ago now. My sister-in-law told me that it took her brother ten years! TEN YEARS!! But, at least, he did eventually get it. Of course, all this may not matter. I really think that, regardless of which candidate gets elected as President, we're going to completely lose our social security system, and we'll never get back what we paid into it. Just wish I could still work full-time or at least had some alternate income..
April 5, 2012
Thought I'd put a quick note on here in case anyone was wondering where I've been. I had a hearing on April 3rd with my state's social and rehabilitation services to try and get my medical assistance back as they closed out my case. It's kind of a long story, but I had to show they improperly handled my case, which hopefully I did at my hearing this past week. I really need the medical assistance since I have chronic health conditions and am in need of several surgeries, which I cannot afford without the medical assistance. If you believe in prayer, I hope you will pray for me that the outcome of the hearing is better than I could have ever dreamed of. And thank you for thinking of me and praying for me.
Living in a small town in Kansas now. Still love to do karaoke. Have my wonderful dog, Scout, and my three cats, Bogart, Woody, and Mom, to keep me company. Sure am glad I found out about this web site so I can get online and join the karaoke fun whenever!
Also, I am not looking for love or anything like that here. I have too many health problems now to be concerned about that. But I still wanna make a lot of friends, and I can't think of a better way to do that than through music!!
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