Well, well, well! Almost May already! My blogging has been lax, and I am sorry for this!
The chair has helped out so much! I still have some family that doesn't think the chair should be necessary. I really wish they were right~
On May 14th, I graduate from Spoon River College! I am getting an Associates of Arts in Teaching for Special Education, and another AAT for Early Childhood Education! I am planning on attending Western Illinois University in the fall. At graduation, however, only one side of the stage has a ramp. This is the side that everyone comes down from. I guess we are going to have my chair at the end of the stage waiting, and I am going to walk across the stage for graduation. I am extremely nervous about this, as I am so scared to fall, or throw something out, such as a hip, while going across the stage. I really want to do this, but I am just nervous. With the way the flow of the graduation is, my disability advisor at the college thought it would be the best, if possible, to try it this way. I also found out that I am the only one going through graduation with an AAT degree. Only one other person is graduating with this degree, and she is not going through the ceremony. I wish she was!
Still waiting to hear who is coming to watch the graduation. It is at a local high school gymnasium. I kinda laughed to hear that I have to go back to high school in order to graduate from college!
My daughter, that also has EDS, just had a tooth extracted last week. As usual, she is having problems healing. She was pretty sick last night and this morning. She is home from school, and it appears that I will be calling the doctor today. Pray that it isn't something serious!
My only other major issue right now is gas stations. Does any other EDSer have an issue with this? The gas stations offer handicapped fueling, and they tell you to honk twice, wait five minutes, and if no one comes out, honk again. I now honk twice, wait about 3 minutes, and then call inside. I have been collecting the phone numbers of all local gas stations. I had to leave one gas station, as the attendant refused to help because she was alone. She didn't want to be outside the building if anyone else showed up. I didn't have the phone number, so I sent my daughter inside to tell her we needed help. She told this to my daughter after waiting almost 15 minutes for her to come out and help. She, being the sassy 13-year-old she is, quipped to the attendant, "If you have a sign that says you provide handicap fueling, you should provide it, or take the sign down!" That's my Sami... I now do not go to that gas station. If at all possible, I get my husband to fill the tank for me. Gas prices being what they are, however, I am trying to stay away from as many of those stations as possible! I have a full size, 1991 Chevy G20 Sport Van. We still laugh at the "Sport" part of the name. We joke that it runs well, and passes everything... except a gas station. It has a wheelchair lift installed in it, so while it is short on looks and gas mileage, it sure is a help to have.
Thanks for reading! Hopefully will update again soon!
Thursday, April 28, 2011
Thursday, January 13, 2011
Winter and Wheelchairs
Well, I called Invacare yesterday. I asked them if I should be going out in my powerchair, since we just got a few inches of snow. Of course, they said that the chair was not waterproof, so they didn't recommend that I did.
I guess I don't understand something. Why isn't someone out there working on a powered wheelchair that can be used in all weather? I got the chair for better independence. I am going to school. In Illinois. In the spring. That is a recipe for daily adverse weather.
I think it was just a hit to me that I feel I must still be dependent of others in order to have independence. Does this make sense to anyone else? I had a friend that came over and shoveled, shoveled, shoveled... Thank you, Jenna!
Powerchairs... they cost a lot, and have plenty of restrictions with them. If you can, also have a manual chair for the days that the powerchair shouldn't be out (which in Illinois, is quite often apparently). I don't like using a manual wheelchair, because of how much it tears up my fingers, hands, and arms. I guess it is a price to pay, however!
I guess I don't understand something. Why isn't someone out there working on a powered wheelchair that can be used in all weather? I got the chair for better independence. I am going to school. In Illinois. In the spring. That is a recipe for daily adverse weather.
I think it was just a hit to me that I feel I must still be dependent of others in order to have independence. Does this make sense to anyone else? I had a friend that came over and shoveled, shoveled, shoveled... Thank you, Jenna!
Powerchairs... they cost a lot, and have plenty of restrictions with them. If you can, also have a manual chair for the days that the powerchair shouldn't be out (which in Illinois, is quite often apparently). I don't like using a manual wheelchair, because of how much it tears up my fingers, hands, and arms. I guess it is a price to pay, however!
Thursday, January 6, 2011
A bit frustrated
I went to a community chorus practice tonight. Tonight was the first night to meet and rehearse. We will be performing it in 7 weeks, so I knew that there would be a lot of practicing and a lot of learning. They were meeting in the basement, so I had to use the wheelchair ramp, and then the elevator. I am 120 pounds. My chair is 264 pounds. The weight limit on the elevator was a mere 350 pounds. I out weighed it. We lowered the chair in the elevator, and I had to take the stairs. Not real easy, but got there. Met the chair at the bottom, and quickly got back in it. My legs were ready to go on me.
When I got down to the basement, I was met by one of the production managers of this. She said that there would be no way that I could get the chair on the stage, and that it would not be able to fit in the script. She saw that I had a cane (my daughter fetched it to help me down the stairs), and said excitedly that I could use the cane to help me get across the stage and to stand when we stand for different parts of the production. I don't honestly think I can do it. I feel that I am left out, and that if I want to use the chair, which I need, I can't be in the production. I understand that there is no easy way to get me on the stage with the chair. But I felt like the kid on the playground that was told that they couldn't play with a group of other kids.
Not sure what I am going to do from here. I enjoyed doing the music, and it was a friend that wrote this entire mass/play.
What do you think I should do?
Angie
When I got down to the basement, I was met by one of the production managers of this. She said that there would be no way that I could get the chair on the stage, and that it would not be able to fit in the script. She saw that I had a cane (my daughter fetched it to help me down the stairs), and said excitedly that I could use the cane to help me get across the stage and to stand when we stand for different parts of the production. I don't honestly think I can do it. I feel that I am left out, and that if I want to use the chair, which I need, I can't be in the production. I understand that there is no easy way to get me on the stage with the chair. But I felt like the kid on the playground that was told that they couldn't play with a group of other kids.
Not sure what I am going to do from here. I enjoyed doing the music, and it was a friend that wrote this entire mass/play.
What do you think I should do?
Angie
It has been forever since I have updated on here. I finally got my power chair, and I love it. I am working with vocational rehabilitation, department of human services, department of rehabilitation, career link, and United Access to try to get a vehicle that I can use to get the chair inside a vehicle, rather than carrying it on the outside on a wheelchair carrier. I am having a hard time using the heavy gate, a hard time balancing and standing while strapping the chair to the carrier. I am having a tougher time getting all of these departments to work together.
I have one semester left at Spoon River College! Yay! I have 5 classes to take this semester. I also got inducted into Phi Theta Kappa Honor Society! After that, it is on to Western. The only problem with that, however, is that it is a 30 mile trip to WIU, and a 30 mile trip home. Not sure how often I will have class, this means that I have GOT to get the wheelchair thing taken care of.
Dislocations have been becoming more frequent lately, but not as painful. Does that make sense? To anyone with EDS, have you experienced this? I'm not saying it is without pain... far from it! But I have noticed that the same dislocation may be an 8 on a scale of 10, rather than an 11 out of 10. I wonder if the joints are sliding in and out more easily, or if my pain tolerance has increased. Maybe a combo?
I tried a Tempurpedic bed at the back store the other day. HEAVEN! I want the cloud luxe! I felt like I was laying on a marshmallow! I noticed that the pain in the joints would disappear for the few moments that I was laying on that! Now if anyone has a spare $4,000...
Hope to post more soon!
Angie
I have one semester left at Spoon River College! Yay! I have 5 classes to take this semester. I also got inducted into Phi Theta Kappa Honor Society! After that, it is on to Western. The only problem with that, however, is that it is a 30 mile trip to WIU, and a 30 mile trip home. Not sure how often I will have class, this means that I have GOT to get the wheelchair thing taken care of.
Dislocations have been becoming more frequent lately, but not as painful. Does that make sense? To anyone with EDS, have you experienced this? I'm not saying it is without pain... far from it! But I have noticed that the same dislocation may be an 8 on a scale of 10, rather than an 11 out of 10. I wonder if the joints are sliding in and out more easily, or if my pain tolerance has increased. Maybe a combo?
I tried a Tempurpedic bed at the back store the other day. HEAVEN! I want the cloud luxe! I felt like I was laying on a marshmallow! I noticed that the pain in the joints would disappear for the few moments that I was laying on that! Now if anyone has a spare $4,000...
Hope to post more soon!
Angie
Friday, September 17, 2010
Waiting, waiting, waiting!
Well, I am now waiting on a powerchair to be ordered and delivered. I have never seen a process so slow, that it makes watching grass grow or watching paint dry seem exciting in comparison!
On May 29,2010, I was diagnosed with a right hip dislocation. Yes, that was painful.
Originally, I had an appointment back in February to see my geneticist for my routine 2 year follow-up appointment. Between my father's passing, and then my husband's grandfather's passing a mere 6 days later, that appointment was not to be. I rescheduled for the next earliest appointment, which was June 2. These appointments are terrible to try to reschedule, simply due to the long wait between appointments. After the hip dislocation, though, in retrospect, I think this was no coincidence that the appt was for that time.
As I was talking to the geneticist, Dr. Pamela Trepane, we came to the conclusion that it was probably for the best that I begin using a power chair. I had no idea what I was getting myself into. Dr. Trepane sent a prescription for a power wheelchair to the disability clinic at the University of Iowa. 2 weeks later, I met with them, and was fit for the power chair. This all happened during a tornado warning. Since we were on the 3rd floor, I had to be escorted downstairs into a hallway that everyone else was crammed into. They gave me the choice between making the 300 mile round trip again another time, or finish the appointment there in the hallway. I chose the latter. While they were measuring me for the chair (and they don't miss a measurement, I'm here to tell you), my daughter that accompanied me on the trip made a sage (and LOUD) observation... "Mom, your hips are wider than your chest!" Thanks Sami, but I don't think they heard you in the back of the hallway.... wanna say that a little louder next time??? Anyway, the appointment was finished after they listed all the medical reasons that supported me using a powerchair. A representative from Keokuk Area Medical Equipment had met us there, so he promised to visit me in Canton soon.
A couple of weeks later, the representative from Keokuk Area Medical Equipment visited my home and made measurements of all the doorways in my home, and brought a chair to the house for me to try to drive around. I asked if he had received the written documents from the disability clinic yet, and he hadn't. The occupational therapist was out of the office for several days, so that was a 'first taste' of what learning to be patient thru this process really meant. July was now almost upon us. He received these about the 2nd week of July. I started panicking that the chair was going to be ordered soon, the deck with the wheelchair ramp was not going to be ready,and that we were unprepared for this. My husband purchased the materials for the deck, and he and several men from my church got the deck mostly constructed in a little over a day's time. We had a contractor frame a wheelchair ramp in after this proved to be a rather large challenge. Some men helped Marc with finishing the ramp. All that is left for that now is a few more balusters, but that is more aesthetics than anything. Anyway, I digress...
The representative from KAME called that 2nd week of July, and said that I had to make an appointment with one of my doctors at the University of Iowa for a face-to-face visit. This was to be done to show that the doctor and I agreed with the findings of the occupational therapist that wrote the papers at the disability clinic, and to agree with the prescribed need for a power chair from the original doctor. Medicare requirement. I was a little annoyed with this, especially since I had just been to the University of Iowa a few days before to consult my EDS doctor about a fireworks accident on the 4th of July that burned my arm and subluxed my shoulder. I'll get to that story in another post. However, I made the appointment, arrived, and Dr. Phillips had the letter of support for the chair ready for me before he walked into my room to even say hello.
I faxed this letter to KAME, who then contacted Dr. Phillips to tweak the letter a bit here or there. I don't know what all that was, since I never received a copy of the revised letter, nor have I asked for it. Everything then had to be submitted back to the original prescribing doctor, the very busy geneticist. By the time this got signed off and returned to KAME, it was late August. The entire medical process of getting the power chair had lasted from when my children got out of school on summer break, to when they returned to school for the new school year. It was finally ready to submit to the insurance company for pre-approval. Are you kidding me?! I wish I was.
Now, the insurance company received the entirety of the medical file on August 27th. Blue Cross and Blue Shield of Iowa had a goal to have a decision made within 15 days. As of September 7th, the power chair was medically approved!
I thought that this meant that the speed of this process was finally starting to pick up some steam. Well, maybe a little, but nothing is on order yet. We are figuring out how this will be hauled with the van (the chair is very heavy, and a standard hitch will not hold that much tongue weight of the chair plus the weight of the carrier itself). He also, as of yesterday, had to change the back of this chair to be able to fold down because of how tall this chair is. Since this is a costly addition, he is now contacting the insurance company again to try to find out how much they plan on paying for the pink powerchair. He also is trying to get BC/BS to pay for a seat elevator, which will raise and lower the seat a grand total of 7 inches to help with standing and also with reaching above my head to try to avoid shoulder dislocations.
I would love to hear from them today that the chair is actually being ordered. He said that once the wheelchair is ordered, he could possibly have it in in as little as 10 business days. After this whole process, I translate that to mean hopefully before the snow starts to fly. I really thought in the beginning of this process, that I would have the chair in July or August at the very latest. Now, I am a little more educated in this process.
Do I want the chair? Yes and no. I don't want it for all the obvious reasons. I do want it for what that chair can help me do, such as get around a school campus easier, go to Walmart without taking the chance of dislocating a wrist, shoulder, or finger, get out and have more freedom than I have with the manual chair. And... it's PINK. Come on, when isn't that a benefit? My own personal pink cadillac (actually an Invacare TDX SP)...
Now trying to take out a student loan to help pay for a carrier/hitch or whatever of some sort so that I can haul the chair. If I want to haul the chair on the outside of the van, I have to have a class 4 hitch on my Chevrolet Venture Van. I have a class 2... that won't work! The chair is 264 pounds (what every woman wants to hear... you're gonna gain 264 pounds very soon...), along with a carrier, which is approx 100 pounds... tongue weight for a class 2 is 350 pounds max. No insurance company will help pay for a way to haul the wheelchair. That falls into our hands to pay for out of pocket.
Well, that was part of what I did on my summer vacation! I will post about the firework incident later. I will be back with another post soon, I hope! Take care, and thanks for reading!
On May 29,2010, I was diagnosed with a right hip dislocation. Yes, that was painful.
Originally, I had an appointment back in February to see my geneticist for my routine 2 year follow-up appointment. Between my father's passing, and then my husband's grandfather's passing a mere 6 days later, that appointment was not to be. I rescheduled for the next earliest appointment, which was June 2. These appointments are terrible to try to reschedule, simply due to the long wait between appointments. After the hip dislocation, though, in retrospect, I think this was no coincidence that the appt was for that time.
As I was talking to the geneticist, Dr. Pamela Trepane, we came to the conclusion that it was probably for the best that I begin using a power chair. I had no idea what I was getting myself into. Dr. Trepane sent a prescription for a power wheelchair to the disability clinic at the University of Iowa. 2 weeks later, I met with them, and was fit for the power chair. This all happened during a tornado warning. Since we were on the 3rd floor, I had to be escorted downstairs into a hallway that everyone else was crammed into. They gave me the choice between making the 300 mile round trip again another time, or finish the appointment there in the hallway. I chose the latter. While they were measuring me for the chair (and they don't miss a measurement, I'm here to tell you), my daughter that accompanied me on the trip made a sage (and LOUD) observation... "Mom, your hips are wider than your chest!" Thanks Sami, but I don't think they heard you in the back of the hallway.... wanna say that a little louder next time??? Anyway, the appointment was finished after they listed all the medical reasons that supported me using a powerchair. A representative from Keokuk Area Medical Equipment had met us there, so he promised to visit me in Canton soon.
A couple of weeks later, the representative from Keokuk Area Medical Equipment visited my home and made measurements of all the doorways in my home, and brought a chair to the house for me to try to drive around. I asked if he had received the written documents from the disability clinic yet, and he hadn't. The occupational therapist was out of the office for several days, so that was a 'first taste' of what learning to be patient thru this process really meant. July was now almost upon us. He received these about the 2nd week of July. I started panicking that the chair was going to be ordered soon, the deck with the wheelchair ramp was not going to be ready,and that we were unprepared for this. My husband purchased the materials for the deck, and he and several men from my church got the deck mostly constructed in a little over a day's time. We had a contractor frame a wheelchair ramp in after this proved to be a rather large challenge. Some men helped Marc with finishing the ramp. All that is left for that now is a few more balusters, but that is more aesthetics than anything. Anyway, I digress...
The representative from KAME called that 2nd week of July, and said that I had to make an appointment with one of my doctors at the University of Iowa for a face-to-face visit. This was to be done to show that the doctor and I agreed with the findings of the occupational therapist that wrote the papers at the disability clinic, and to agree with the prescribed need for a power chair from the original doctor. Medicare requirement. I was a little annoyed with this, especially since I had just been to the University of Iowa a few days before to consult my EDS doctor about a fireworks accident on the 4th of July that burned my arm and subluxed my shoulder. I'll get to that story in another post. However, I made the appointment, arrived, and Dr. Phillips had the letter of support for the chair ready for me before he walked into my room to even say hello.
I faxed this letter to KAME, who then contacted Dr. Phillips to tweak the letter a bit here or there. I don't know what all that was, since I never received a copy of the revised letter, nor have I asked for it. Everything then had to be submitted back to the original prescribing doctor, the very busy geneticist. By the time this got signed off and returned to KAME, it was late August. The entire medical process of getting the power chair had lasted from when my children got out of school on summer break, to when they returned to school for the new school year. It was finally ready to submit to the insurance company for pre-approval. Are you kidding me?! I wish I was.
Now, the insurance company received the entirety of the medical file on August 27th. Blue Cross and Blue Shield of Iowa had a goal to have a decision made within 15 days. As of September 7th, the power chair was medically approved!
I thought that this meant that the speed of this process was finally starting to pick up some steam. Well, maybe a little, but nothing is on order yet. We are figuring out how this will be hauled with the van (the chair is very heavy, and a standard hitch will not hold that much tongue weight of the chair plus the weight of the carrier itself). He also, as of yesterday, had to change the back of this chair to be able to fold down because of how tall this chair is. Since this is a costly addition, he is now contacting the insurance company again to try to find out how much they plan on paying for the pink powerchair. He also is trying to get BC/BS to pay for a seat elevator, which will raise and lower the seat a grand total of 7 inches to help with standing and also with reaching above my head to try to avoid shoulder dislocations.
I would love to hear from them today that the chair is actually being ordered. He said that once the wheelchair is ordered, he could possibly have it in in as little as 10 business days. After this whole process, I translate that to mean hopefully before the snow starts to fly. I really thought in the beginning of this process, that I would have the chair in July or August at the very latest. Now, I am a little more educated in this process.
Do I want the chair? Yes and no. I don't want it for all the obvious reasons. I do want it for what that chair can help me do, such as get around a school campus easier, go to Walmart without taking the chance of dislocating a wrist, shoulder, or finger, get out and have more freedom than I have with the manual chair. And... it's PINK. Come on, when isn't that a benefit? My own personal pink cadillac (actually an Invacare TDX SP)...
Now trying to take out a student loan to help pay for a carrier/hitch or whatever of some sort so that I can haul the chair. If I want to haul the chair on the outside of the van, I have to have a class 4 hitch on my Chevrolet Venture Van. I have a class 2... that won't work! The chair is 264 pounds (what every woman wants to hear... you're gonna gain 264 pounds very soon...), along with a carrier, which is approx 100 pounds... tongue weight for a class 2 is 350 pounds max. No insurance company will help pay for a way to haul the wheelchair. That falls into our hands to pay for out of pocket.
Well, that was part of what I did on my summer vacation! I will post about the firework incident later. I will be back with another post soon, I hope! Take care, and thanks for reading!
Monday, February 16, 2009
My story
Hi! Welcome to my first attempt at blogging here!
I have a disorder called Ehlers-Danlos Syndrome. This diagnosis has been both a blessing and a curse. How can a diagnosis of a disorder that absolutely stinks be a blessing? Read on...
When I was about 12-years-old, I was climbing the stairs at my house in Galesburg, IL. I was headed to my room, as I really did not want to leave with my mother for a 3-day visit. I was on my way to hide out in my room, when all of a sudden, my knee gave way underneath me. I remember that being the worst pain I had ever felt. I was screaming, I was so confused, and yet I knew that I needed some medical help, right away. Problem was, I didn't get it. My mother thought that it was a ruse to try to stay home, so she scooped me up and put me in the backseat of her car. She had to teach aerobics at the YMCA that night, so I sat in a ton of pain with a dislocated knee at the Y. No one took me seriously, because mom had told them I was acting up. I continued to be unable to walk, and unable to do anything for those days.
When she finally took me home, my father saw that my leg did not look right, and immediately took me into the emergency room. They put my knee back into place (which hurt almost worse than the initial dislocation). I was referred to Dr. Speca, an orthopaedic surgeon, who kept me in a brace and on crutches for months. My parents couldn't afford physical therapy or very many visits, so I only saw a doctor when I threw it out and absolutely needed a dr, and I had a total of 2 physical therapy visits over the next 6 years.
My first knee surgeries came in 2000, when a doctor in Galesburg thought that he could do a simple arthroscopic surgery to stop the dislocations. It was called a lateral release surgery. I had it done on both of my legs. Four months later, I was making homemade pizza in my kitchen, and I went from upright to on the floor in half a second. One of my knees had gone out on me again. And the pizza dough that I had been carrying to the pan went flying, and was glopping its doughy way down the side of my refrigerator.
My husband wanted me to get a referral to the University of Iowa, or to Mayo Clinic. We got the referral, and shortly thereafter, I had a Fulkerson Osteotomy with patellar tendon transplants in each leg(2005). Those surgeries were torture, and I still have complications from those surgeries.
Up through this time (2005 by now), I had no answer of what it was that was causing my knee dislocations and all over pain. I was having other joint problems and pain, but figured that it was completely unrelated to my knees. One of the doctors at the U of Iowa finally thought to refer me to the geneticist to see what could be going on.
The geneticist took one hour to summarize everything that had been going on with me over the past years. She diagnosed me with Ehlers-Danlos Syndrome.
What is EDS? Ehlers-Danlos Syndrome is a connective tissue disorder that is caused by faulty collagen. There is no known cure. It causes weak joints, weak blood vessels, and even weak organs. My daughter has aortic root dialtation. The force of the blood pumping through her heart and into her aorta has made that area dilate, and has made that area weaker. Yearly, she goes in for an echocardiogram to check the status of that. It scares me.
She diagnosed me with the classical form with a severe expression of hypermobility. For so many years, I felt so isolated by my freaky dislocations, pain, and contortionism. All of a sudden, I had a diagnosis. It was a blessing, because no matter where I went in the hospital, there were so many that understood EDS. I didn't feel as isolated, and I ended up finding an entire community of others online that had the same problem as me.
The curse has been to live with this diagnosis. You name it, and I may have thrown it out. Shoulder, knees, fingers, etc. I have silver ring splints for my fingers. Please contact me if you want an original way to get the insurance company to pay for them. I really hate when my ankle gives way on me and rolls out. The EDS also caused ligament weakness that caused my uterus to prolapse, and I had a hysterectomy August 29, 2008. I take Lyrica, diclofenac, Norflex, and Tramadol for pain. I have been going to the Univ. of Iowa for facet injections in my neck, due to cervical disc degeneration, medication changes, knee studies, echocardiograms, headaches, and now for my daughter, who has also been diagnosed with Ehlers-Danlos Syndrome. I am going to a local clinic here for hyalgan injections in my knees for arthritis.
I have 3 more children that could have EDS. We haven't gotten them officially diagnosed yet. Until we have a problem, I really don't want to. I'm afraid that if we were to switch insurances, that it would be looked at as a pre-existing condition, and almost everything could be linked to it, and be denied for payment.
I am on Social Security Disability. It took only 9 weeks for approval, and I did not use an attorney. I guess the letter from the geneticist couldn't be refuted too easily! That, and pages upon pages of medical history with the University of Iowa. Along with asthma, I guess it was enough. The pay on SSD stinks, but it is something at least. I consider myself to be a paid stay-at-home mom. It is only 4 hours a week, but I receive housekeeping from the Illinois Department of Rehabilitation. It keeps me from climbing around trying to dust ceiling fans and carry laundry from the basement, which can potentially be hazardous.
I go in March 20th to have the hardware removed from my right tibia. It is irritating the bone, and hopefully, I will do better with it gone. My daughter is going in for surgery to "install" a cadaver tendon in each knee to tighten her knee up, and try to prevent dislocations. He thinks she can have surgery on Friday, and go back to school the following Monday. I would prefer to do this at a little slower pace, so we are waiting for spring break for one, and summer break for the other.
Thanks for taking the time to read this summary!
Much love,
Angela
I have a disorder called Ehlers-Danlos Syndrome. This diagnosis has been both a blessing and a curse. How can a diagnosis of a disorder that absolutely stinks be a blessing? Read on...
When I was about 12-years-old, I was climbing the stairs at my house in Galesburg, IL. I was headed to my room, as I really did not want to leave with my mother for a 3-day visit. I was on my way to hide out in my room, when all of a sudden, my knee gave way underneath me. I remember that being the worst pain I had ever felt. I was screaming, I was so confused, and yet I knew that I needed some medical help, right away. Problem was, I didn't get it. My mother thought that it was a ruse to try to stay home, so she scooped me up and put me in the backseat of her car. She had to teach aerobics at the YMCA that night, so I sat in a ton of pain with a dislocated knee at the Y. No one took me seriously, because mom had told them I was acting up. I continued to be unable to walk, and unable to do anything for those days.
When she finally took me home, my father saw that my leg did not look right, and immediately took me into the emergency room. They put my knee back into place (which hurt almost worse than the initial dislocation). I was referred to Dr. Speca, an orthopaedic surgeon, who kept me in a brace and on crutches for months. My parents couldn't afford physical therapy or very many visits, so I only saw a doctor when I threw it out and absolutely needed a dr, and I had a total of 2 physical therapy visits over the next 6 years.
My first knee surgeries came in 2000, when a doctor in Galesburg thought that he could do a simple arthroscopic surgery to stop the dislocations. It was called a lateral release surgery. I had it done on both of my legs. Four months later, I was making homemade pizza in my kitchen, and I went from upright to on the floor in half a second. One of my knees had gone out on me again. And the pizza dough that I had been carrying to the pan went flying, and was glopping its doughy way down the side of my refrigerator.
My husband wanted me to get a referral to the University of Iowa, or to Mayo Clinic. We got the referral, and shortly thereafter, I had a Fulkerson Osteotomy with patellar tendon transplants in each leg(2005). Those surgeries were torture, and I still have complications from those surgeries.
Up through this time (2005 by now), I had no answer of what it was that was causing my knee dislocations and all over pain. I was having other joint problems and pain, but figured that it was completely unrelated to my knees. One of the doctors at the U of Iowa finally thought to refer me to the geneticist to see what could be going on.
The geneticist took one hour to summarize everything that had been going on with me over the past years. She diagnosed me with Ehlers-Danlos Syndrome.
What is EDS? Ehlers-Danlos Syndrome is a connective tissue disorder that is caused by faulty collagen. There is no known cure. It causes weak joints, weak blood vessels, and even weak organs. My daughter has aortic root dialtation. The force of the blood pumping through her heart and into her aorta has made that area dilate, and has made that area weaker. Yearly, she goes in for an echocardiogram to check the status of that. It scares me.
She diagnosed me with the classical form with a severe expression of hypermobility. For so many years, I felt so isolated by my freaky dislocations, pain, and contortionism. All of a sudden, I had a diagnosis. It was a blessing, because no matter where I went in the hospital, there were so many that understood EDS. I didn't feel as isolated, and I ended up finding an entire community of others online that had the same problem as me.
The curse has been to live with this diagnosis. You name it, and I may have thrown it out. Shoulder, knees, fingers, etc. I have silver ring splints for my fingers. Please contact me if you want an original way to get the insurance company to pay for them. I really hate when my ankle gives way on me and rolls out. The EDS also caused ligament weakness that caused my uterus to prolapse, and I had a hysterectomy August 29, 2008. I take Lyrica, diclofenac, Norflex, and Tramadol for pain. I have been going to the Univ. of Iowa for facet injections in my neck, due to cervical disc degeneration, medication changes, knee studies, echocardiograms, headaches, and now for my daughter, who has also been diagnosed with Ehlers-Danlos Syndrome. I am going to a local clinic here for hyalgan injections in my knees for arthritis.
I have 3 more children that could have EDS. We haven't gotten them officially diagnosed yet. Until we have a problem, I really don't want to. I'm afraid that if we were to switch insurances, that it would be looked at as a pre-existing condition, and almost everything could be linked to it, and be denied for payment.
I am on Social Security Disability. It took only 9 weeks for approval, and I did not use an attorney. I guess the letter from the geneticist couldn't be refuted too easily! That, and pages upon pages of medical history with the University of Iowa. Along with asthma, I guess it was enough. The pay on SSD stinks, but it is something at least. I consider myself to be a paid stay-at-home mom. It is only 4 hours a week, but I receive housekeeping from the Illinois Department of Rehabilitation. It keeps me from climbing around trying to dust ceiling fans and carry laundry from the basement, which can potentially be hazardous.
I go in March 20th to have the hardware removed from my right tibia. It is irritating the bone, and hopefully, I will do better with it gone. My daughter is going in for surgery to "install" a cadaver tendon in each knee to tighten her knee up, and try to prevent dislocations. He thinks she can have surgery on Friday, and go back to school the following Monday. I would prefer to do this at a little slower pace, so we are waiting for spring break for one, and summer break for the other.
Thanks for taking the time to read this summary!
Much love,
Angela
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