RICKETS, SPINAL STENOSIS, OSTEOARTHRITIS, & A PARTRIDGE IN A PEAR TREE

I’ll start with what I have been diagnosed with and know for sure is accurate. There are a lot of big words with small definitions and some with more complicated explanations. I’ll try not to put you to sleep.

• Arthritis
• Osteoarthritis
• Degenerative Disc Disease
• Spondylolisthesis
• Spinal Stenosis
• Osteoporosis
• Familial Hypophosphatemia (vitamin D resistant Rickets)
• Bilateral Temporomandibular Joint Disorders

I have had problems with my back since my late teens. I never really thought about it. Most of my family has back problems. Mostly on my mom’s side.

My mom went to many, many, doctors. Almost all of them told her if she lost weight her pain would go away. I did not want the same said to me. So I ignored the pain.

In my late twenties I had begun to have back spasms and in my right hip I could hear a clicking when I walked. The spasms sometimes left me stuck in one place for long periods of time. When I was eventually stuck on the bathroom floor for 5 hours I decided it was time to see the Doctor.

There were X-rays taken and tests done. The verdict at the time was I was riddled with Arthritis in my hips, pelvis, and lower back. My Doctor also mentioned that a Hip Replacement wouldn’t be too far off. Hip Replacement? I was only in my late twenties.

There wasn’t much to be done about the Arthritis but deal with it. It wasn’t until my 30’s that things took a turn for the worse. I was working 50-60 hours a week, my mom had just passed away, I wasn’t taking care of myself, and I decided to lift a giant TV from the floor to about a foot above my head. Not one of my best ideas. I knew as soon as it happened. It felt like when you hit your funny bone only not funny.

Like everyone in my family except my mom, I waited to go to the Doctor. When I did she sent me for every test possible and while waiting for the results physical therapy. I managed a few sessions of physical therapy but when my back seized in the parking lot they refused to touch me. One of the therapists asked if my Doctor had talked to me yet. It had been a month. I told her no. She looked frustrated and said she couldn’t touch me until she knew what was going on. I gave her permission to call the place that did the imaging. The look on her face as she listened said it all.

A ruptured disc, 2 bulging above and 2 bulging below plus a lot more other problems that would have to be worked on. Who doesn’t let their patient know immediately that they are walking around with a ruptured disc in their back for over a month? I wasn’t happy.

I finally got answers. Some of it is genetic, some of it is because I have Celiac Disease and my immune system plays a part but it’s been a long road.

Osteoarthritis- cartilage between joints breaks down causing pain, stiffness, and swelling. The bones can over time break down and develop spurs. Towards the end stages cartilage wears away to nothing leaving bone on bone. I was told by one Doctor that once you reach the bone on bone stage the pain lessens. Doesn’t quite sound right but what do I know?

Degenerative Disc Disease- Discs help absorb shock between the bones of the spine and help the back stay flexible. These rubbery discs can shrink and lose flexibility causing pain. If the disc is dried out it can’t repair itself and will deteriorate. This happens mostly in the lower back and the neck.

Osteoporosis- When tissue breaks down faster than it can be replaced in bones. This makes the bones thinner and more likely to break. It also causes loss in height.

Spinal Stenosis- This is a narrowing of the spinal column that can press on the nerves in the spine causing neck and back pain. It also causes numbness or weakness in the arms or legs, or pain going down the leg. To diagnose this they usually do a MRI, CT, and Bone Scans. I also had a liquid dye injected into my spinal column so they could see what was going on more clearly.

Familial Hypophosphatemia-  This is a somewhat rare inherited disorder. It has to do with impaired transport of phosphate and altered vitamin D metabolism in the kidneys. Phosphate may not be well absorbed in the kidneys, in others the intestines. It causes softening of the bones, arthritis, spinal stenosis, and hip problems. Other adult symptoms are muscle cramps, bone spurs, dental problems, and hearing issues.(aka vitamin d resistant rickets)

I’ve had 5 Epidurals, a TENS machine, Physical Therapy, and medications I can’t take.

No one will do surgery because of a “domino effect” and that’s ok. I’m more worried about my neck now. I knew the stenosis went to the top of my spinal column but I’m hoping that isn’t what’s causing the pain. First thing in the morning I have to lift my head off my pillow with my hands because my neck is in too much pain.

W’s mom had similar problems with her neck and had to have discs replaced with cadaver bone. It was a long recovery. But she’s great now. I think it’s advanced since then. I would get second and third opinions before surgery and it wouldn’t be in my state.

You have to get second opinions. One Physician’s Assistant kept telling me my back pain was due to my mother’s death. She kept referring me to a Therapist. I know pain and the brain and can go together. I had enough finally and exploded. “My mother’s death didn’t cause a ruptured disc, bulging discs, Osteoarthritis, Osteoporosis, areas of my spine to be bone on bone or for me to go from 5’7″ to 5’6″ in a f*cking year!”. I never went back there for some reason.

Do your research but don’t over do it like I do. Always get a second opinion before surgery specifically with your back or neck. And never let the Doctor tell you what to do. There is no magic fix. Everything I read says Physical Therapy and Medications to ease Inflammation. As a last resort they will recommend surgery but most Doctors would advise against it unless absolutely necessary.

Retroperitoneal Fibrosis~ Diagnosis

Some of you may know that in July I went into life threatening Kidney Failure. I really didn’t have any unusual symptoms except for swollen feet. It’s a good thing something inside of me said “go to the ER”. I was close to death.

The Doctors put stents in to keep my ureters open so that urine wouldn’t build up in my kidneys. They knew the problem was with my ureters but they didn’t know what or why. I had several biopsies that showed irregularities but no reason for Kidney Failure. At the time the Doctors were concentrating on my bladder and not really on my kidneys.

They didn’t find out until December that my kidneys had been damaged beyond repair. The right on was only functioning at 19% and the left was working too hard to make up the difference.

I went to several specialists with no answers. They all agreed there was an obstruction that had to be taken care of they just didn’t know where or how. One Doctor wanted to put tubes in my back going to my kidneys. I was scared. When the Doctors tried to take out the stents I would start to go into kidney failure within 24 hours.

The last Doctor I went to is a Nephrologist. He didn’t seem to take my condition seriously because he works with dialysis patients daily. He did come up with Retroperitoneal Fibrosis.

This is an autoimmune disorder where abnormal fiber like tissue occurs behind the membrane that lines the cavity of the abdomen. The growth spreads to affect the ureters or a mass forms and presses on the ureters causing a blockage.

The symptoms for this are:

• pain in the lower back
• pain in the abdomen
• weight loss
• fevers
• anemia
• loss of appetite
• constipation

Sounds like the side effects of most of my Bipolar meds. Topamax is known to cause kidney stones and may contribute to the Fibrosis. I’ve been on it at a high dose for years. No one said anything. They still didn’t say anything after I went into kidney failure. No one questioned my medications.

It’s difficult to get a biopsy for Retroperitoneal Fibrosis. Most masses are Benign but can become malignant. There really isn’t much of a cure for me at this point. I probably will have to have stents for the rest of my life. There were questionable findings in my biopsies but I guess not enough to consider cancer even though everything I read says you should undergo extensive cancer screening including an entire body PET scan.

The Nephrologist never called to tell me any of this. He just wrote up his notes and I read them in my file. I called twice to get answers and was never called back.

All of this has been frustrating. No one really wants to help because it’s rare and complicated. I’m tired of all the tests. I decided to take a break from Doctors for a month or two. I need to reconsider what I want to do and if I should consult different people in the medical field. I feel like crap but at least I have something that makes sense.

Where’s House When You Need Him?

I went to the Urology Specialist at Mass General yesterday. It was a complete waste of time. I have never been so disgusted in my life. Even my twin sister was crying and ready to slap a bitch.

The Dr. had no idea why I was there even though all of my info had been sent to her ahead of time. She didn’t know how to work their new computer system. As she has a scan of my kidneys and bladder on the screen where I can see and she can see, she is making noises to herself and comments. Comments like the following “What a mess!, Oh my God!, What is this?”. I was getting nervous at this point.

She said “You have a LOT going on here. The doctors on your case are very good and did everything I would’ve done. You should have a biopsy where they go through your back though.” I asked her if that was something she would do. She said she wouldn’t take over my case without starting from the beginning and re-doing all the tests and biopsies they had already done. I told her Medicare probably wouldn’t cover that because they had already been done and she said I would have to get pre-approval. No mention of the many financial aid programs Mass General offers. Plus if she thought my doctors did everything right why did she have to re-do everything? I never got an answer for that.

She told me I should see a Nephrologist. I asked if I should see one around Mass General? She said it didn’t matter. She didn’t even try to recommend one. At this point I’m crying. I told her I’m tired and in pain and I really would like to know what’s going on. She said “Of course you are I would be too. You’ve been in Kidney Failure twice, your kidneys are not working the way they should, the right one is barely working. You have to get this figured out before more permanent damage is done.” DUH! That’s why I was there!!!

So it was a wasted trip where I’m worse off than I was before. I have no idea where to go for help when no one wants to help me. It’s even worse because it’s interfering with my Bipolar meds and I’m a mess. I don’t know what to do. I feel like giving up but I can’t.

Invasion of The Doctor Snatchers

I had the most interesting doctor’s appointment today. My sister came with me as back up because I have trouble remembering things. My appointment was with the Urologist that can be a little overbearing and I always take what he says the wrong way. Even my sister has heard him through the wall being an ass to an elderly man with prostrate cancer.

When he entered the room he apologized profusely for being late and gave me a hug. He said he loved what I had on. He then said hello to my sister and said how great it was to see her again. We went over what the plan was going to be for my kidney problem. He wanted to take out one of my stents in their office surgical suite but wasn’t sure.

I was trying to explain to him my problem with waking up from anesthesia because of the Conversion Disorder. I was stuttering and getting emotional. It’s embarrassing when this happens. I needed him to be aware so his staff would know. At the hospital they are a little more equipped with dealing with these problems.

My sister was getting annoyed and said “He doesn’t need to know all this.” He actually hugged me again and said ” Look I love you and care about your well being so I do need to know. If you think the hospital is better than we will do that.” I thought I would fall off the chair. My sister looked even more annoyed.

I think she looked annoyed because she was diagnosed with a version of Conversion Disorder that was easily taken care of. Mine may never go away. Her’s was due to being fired from her job, having 2 small children, and her husband’s addiction issues. Mine is caused by multiple traumas. I also have a coexisting condition that makes it harder to treat. She will never understand this.

When at one point she tried to “shush” me, I said “Don’t you dare do that to me”. It didn’t come out clearly like that because of my stutter but she got it. So did the doctor. On the way out I got more hugs from him. When my sister and I got outside we both started laughing. We couldn’t believe the “hugging” and the “I love you’s” during my visit. I told her there was something not quite right with the guy. You never know what you’re going to get. But I’ll take today’s visit over the other ones anytime.

Why I’m Beginning To Dislike Doctors

When I first started this journey of finding help I was 17 years old. It took until the age of 37 to get some of the correct diagnoses.

Too many doctors assumed that because I am an Alcoholic that my tremors were being caused by my sobriety. They also assumed my cognitive problems were due to drinking also. A few doctors said the longer I was sober the more my cognitive skills would improve. They didn’t.

I was referred to a Neurologist by my General Practitioner when my tremors first started at 35. He diagnosed me with Essential Tremors. This is a hereditary condition that no one in my family had. He had my file and history. He said one thing that helps is to have a “drink” when they get really bad and you’re in a social setting. I told him I’m a recovering alcoholic. He said “You can’t just have a glass of wine or something?”. I thought for such an incredibly intelligent person he sure was stupid. I didn’t go back to him.

Then I was finally diagnosed with Bipolar Disorder. The problem was none of meds worked the way they were supposed to. So after years of my sister telling me to get tested for Celiac Disease I finally did. I resisted previously because I didn’t have the usual symptoms like she did. I didn’t know it caused malnutrition and malabsorption of meds. I didn’t know it interferes with your cognitive skills and can cause tremors and stuttering. So I had the blood work and biopsy done and both were positive. My immune system was severely compromised. My Psychiatrist sent me to another Neurologist.

This one diagnosed me with Conversion Disorder. I didn’t want to believe him. I spent a great deal of time convincing myself it was the Celiac.

There came a time when I finally had to admit he was right.

My stutter and tremors would get worse under stress or if I was upset. I startled easily. Hearing loud men’s voices would set it off, if I felt threatened it would start, if I had a bad memory, anything that was emotionally stressful or disturbing for me would do it. A second opinion confirmed it.

Now with my kidney failure and biopsies the doctor didn’t tell me everything. I got the report sent to me of the lab work done by the Hematologist and results of the biopsies.

No one said there abnormalities of the organs in my pelvis and the soft tissue of my pelvis. No one mentioned I tested twice for Monoclonal Gammopathy or Lymphocytopenia. Also something listed under Immobility Syndrome. A disorder caused by an infectious process involving the skeletal muscles that causes muscle weakness and pain.

I have had problems with my white blood cell count for the last few years. I was diagnosed with Leukopenia. A lot of this has to do with your bone marrow. The Gammopathy and Lymphocytopenia are linked to Multiple Myeloma. So they have been looking in the wrong place for the cause of my kidney failure. All of these things are linked to kidney problems. The Monoclonal Gammopathy is a specific protein found in certain people that has to be monitored because if it isn’t you get problems like I am having. Good to know. So I will not be getting a second opinion from another Urologist. I’m going back to the Hematologist who I didn’t know had called and wanted to see me. He also told my Urologist I needed to see him. My Urologist said nothing except he wanted me go see one of his friends.

I’m truly disgusted with it all. The misdiagnosis, Medicare, my father’s treatment by the insurance company and Medicare. It’s enough to make you give up. Maybe that’s what they want so they don’t have to pay. Make everything as difficult as possible so you don’t bother.

They didn’t count on me. It might take me longer to read and understand everything but I will find a way for my father to regain some of his dignity back. I don’t usually fight for myself, but for my family I will fight with all I have.

Strange Happenings

When I was in the hospital recently, ( you will see me write this a lot in the future), I had a few odd experiences. Some made me cry. One that stands out is when the hospital lost it’s access to water. I was exhausted, a little loopy with pain and in and out of sleep or consciousness. At one point I woke up to what I thought was parade music and people marching down the hall. There were workmen everywhere and a few had white handkerchiefs that I saw on the floor. Maybe I mistook them for confetti. The second time I woke up it was darker and I heard “Release Me” by Pearl Jam. I started crying and couldn’t stop even though it was extremely painful to cry, I just couldn’t stop. I thought of the DNR Order I was asked about. I thought about what it meant. I’m Bipolar for f**k’s sake should I be deciding that for myself? On most days I want to die for various reasons. Some rare days, with the sun on my face, at the beach or at an animal sanctuary or with my nephews I want to live and I’m almost happy. Hearing that song when I was waking up scared me. I didn’t know what it meant. Release me from everything I’ve been carrying around for far too long and let me, let myself be at peace. Or release me from this world to be free and with my mom who I loved so much.

My mom wouldn’t want that for me. She would want me to fight and get better health wise hoping the rest will also follow. That is what I’m going with. It’s what I’m going to try to do. It won’t be easy, it never is but anything worth having is worth the journey and the fight. Sounds cheesy but that’s me. Honesty. Crap, now I have Billy Joel stuck in my head. It’s still good.

A Weighty Issue

Since I have lost weight not one person wants to go clothes shopping with me. I can’t understand this.My sister who has always had issues about her body especially won’t. I’m getting a little pissed off at this point. Now she is making comments about me being too thin. Comments about chicken legs and my face being sunken in. It wasn’t bad enough she was nowhere to be found when I was subjected to public humiliation being 250 pounds but now I have to hear this from her because for the first time in our lives I weigh less than her. She won’t help me pick anything out for the concerts I am going to. She knows it’s important and still won’t. And yet I helped her buy her family groceries yesterday. I know I should let it go, but it’s hard. I am not on a diet I am sick. To what extent I don’t know yet. So if you see me give me a break ok?