A Week of Doctors’ Appointments

Linking up with Being Fibro Mom’s Friday Linkup.

Based upon the advice of my Rheumatologist and blood test results I had my appointment on Monday with the Hematologist/Oncologist. I liked her a lot. She told me that although I had some results that were out of range they were only out of range a bit. She wanted to do more blood work to see if these results were trending up which would be cause for concern. For many months now I have had a pain in the lower left side of my stomach and she also ordered a CAT scan of my abdomen and pelvis.

On Tuesday, I went to the Cleveland Clinic main campus to see a new psychiatrist. I had decided that I was kind of at a standstill with my old psychiatrist. Depression-wise I am not as bad off as I have been but I am still depressed. I have difficulties with day to day activities such as showering, opening my mail and cleaning the house, as well as feelings of sadness and being overwhelmed. Sometimes I wonder if this is the best I can hope for but I switched doctors hoping that there is a better quality of life for me.

I met with the resident first who did an hour assessment, which included my medical history, stressors in my life and the history from my childhood to the present. After the assessment she met with her supervisor who was the doctor Jacques and I had picked out for me due to her reputation. I met with her too. She felt I was on a lot of medications and she wanted to make some changes but one change at a time. I had been on two sedatives for my anxiety and she took me off one of them. She recommended Intensive Out-Patient Therapy (IOP), which is mostly group therapy three to four days per week for three hours a day. I’ve done it before and I’ve hated it! I told her that would be difficult with my physical illness and that I did not like group therapy. If I want therapy I want all the attention on me, maybe I’m selfish but I’ve got too many issues for the focus not to be on me the whole time! After the appointment I really felt I had made the right move in changing doctors and in the doctor I had picked. I have a follow-up appointment in a month.

On Wednesday I got lucky. There was a cancellation with the new Gastroenterologist I was supposed to see on August 31st. I have already seen a Gastroenterologist but wasn’t happy with the way she dismissed me. He recommended that I have an endoscopy and colonoscopy. The only problem is I have to wait THREE months to have them, although the nurse said the procedures could be moved up because a lot of people chicken out! I have had a number of colonoscopies due to having Ulcerative Colitis, which I have been in remission for twenty years and do not see any sign that it has returned.The worse part of a colonoscopy is the prep, where you have to drink a nasty gallon of a laxative and can have only clear liquids the day before.

It is disappointing that I may have to wait three months to get these tests done. I don’t look forward to being nauseated with a low grade fever for what then will have been going on for over a year.

Have you had the experience of a long wait to be diagnosed or waiting a long time to have an appointment or procedure?

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Book Reviews!

Inspired by Mama Kat’s Writer’s Workshop.

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“I was born twice: first as a baby girl on a remarkably smogless day in January of 1960; and then again, as a teenage boy, in an emergency room near Petosky, Michigan in August of 1974.” That’s the first line of this fascinating and wonderful book, which relates the story of the intersex life of Calliope who becomes Cal. The story is interspersed with the tales of three generations of a Greek-American family. I highly recommend this book, unless you are uncomfortable with the subject matter, but it did give me more understanding of the LGBTQ community.

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Major Ernest Pettigrew is part of a generation that still believes in decorum, respect to be earned and modesty. When his brother dies, Pakistani shopkeeper Mrs. Ali shows up at his door to see if he needs anything and an old-fashioned romance begins. I really enjoyed this book; set in a small village in the English countryside. The Major and Mrs. Ali have to deal with prejudice, there is the tenuous relationship between the Major and his son, and still there is some humor to the book. I highly recommend this!

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Librarian Tori Sinclair is new to the town of Sweet Briar, South Carolina and finds it hard to fit in in a town where everyone knows everyone else. But when the town’s sweetheart is found murdered outside the library dumpster Tori becomes everyone’s number one suspect, including the police. Tori must clear her name before she finds herself taken into custody. I found this cozy mystery series (A Southern Sewing Circle) on Pinterest and at first decided not to read any more books in the series. But for some reason I couldn’t stop thinking of Tori and I got the second one in the series and found I liked it better. Tori is likable, there’s some romance and a great cast of supporting characters.

All of these reviews were taken from my goodreads profile and I hope you will friend me on there! Happy reading!

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Doctor’s Visit and Blood Test Results

Linking up with Being Fibro Mom‘s Chronic Friday Linkup

If you have been a regular reader you will know that I’ve been experiencing nausea and a low grade fever since last September with no doctor being able to tell me what’s going on.

I was finally able to see my Rheumatologist. When I explained my symptoms to him he said, “I’m curious to know why you would choose to see a Rheumatologist for these symptoms.” I was a bit shocked but I told him I always think of Lupus when running a low grade fever but he said that was not one of the prominent symptoms.

He said that when patients experience Fever of Unknown Origin (FUO) the first step is to see an Infectious Disease specialist and if nothing turns up, a Hematologist/Oncologist. He told me he was going to run a lot of blood tests and they took ten vials of blood plus a urine specimen. I may have gone to the “wrong” doctor but he was the first one to give me some direction.

It was the first time that certain tests came back as out of range and instead of being happy about it like I thought I would because I’m desperate for a diagnosis and treatment, the feedback from the doctor was that I should make an appointment with a Hematologist/Oncologist, which to me is about the scariest doctor to see.

I think of my therapist telling me that my nausea was probably due to depression and I am angry that she made me think for one second that this was in my head. Every time a doctor doesn’t know what’s wrong with you, they want to go right for a psychological diagnosis.

I picked my Hematologist/Oncologist out of the many from Cleveland Clinic. I read her patient reviews and one of them said that the doctor actually hugged her. I wanted a doctor that hugged people so that was a big selling point for me.

When I called to make an appointment the hold music and information said, “Welcome to the Cleveland Clinic Cancer Center.” There was even an advertisement for wigs that they sold at the clinic. It was one of the scariest things I have ever heard.

When I got through, the scheduler asked if they had access to my test results through the clinic’s system. She told me a nurse was going to study my results and they would get back to me.

In about a half an hour I got a call back to make my appointment which is in mid July. I felt like they had been looking to see if I was sick enough to be seen.

I am trying not to freak out but I can’t help it. I am doing better today. I know I can’t be a mess until I see the doctor, I’ve got to get it together for my son’s sake.

Next week I already had an appointment scheduled with my primary care physician with blood work ordered so perhaps she will be able to shed some light on my results. Normally I research my lab results, and I did to a point but what’s the use of making myself more upset than I already am? It doesn’t have to be cancer, it could be a blood disorder.

Your prayers and good thoughts are appreciated.

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Not my real test results.

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Epic Fail

I was looking forward this weekend to meeting people from one of my Facebook groups at a state park. The group is made up of people in my county who help spread the word when a pet goes missing and I thought they would be a very nice group to meet, with all of us having our love for animals in common.

At 8:00 Sunday morning I felt good and was looking forward to going. Then at 8:30 the anxiety began to kick in. The fear of driving to the park by myself, the sweltering heat of the day; I even had anxiety about getting into the shower, shaving and dressing.

I still felt I had plenty of time to “get it together” but my anxiety only got worse and I started to feel sick to my stomach. I took two of my sedatives for when I am anxious but by about 11:00 I knew I wasn’t going to make it.

When I announced this to Jacques I immediately felt better. The thought of not going out and not showering, and watching Netflix and reading relaxed me. The sedatives kicked in and I fell asleep.

When the party was over and the Facebook posts about the get together started to pop up, I felt really disappointed in myself. I wondered, and you may be wondering too, “Why didn’t I just push myself?” I knew once I could get there I would be okay but the hill to get to that point was just too steep to climb.

The group said they may hold another get-together in early fall on the beach. Hopefully through therapy and the right medicine I can get my anxiety in check to be able to go to it.

For now I just feel like I failed myself. I missed out on something where I possibly would have made some real life friends and I haven’t made any friends since I moved to Ohio.

I haven’t been out in five days but I managed to take a shower yesterday. Today I am planning on taking my son to the pool. On Thursday night he will test for his next belt in Tae Kwon Do and I know I will be there. I seem to be able to make the important events for him but if it’s something for me, I just can’t make myself do it.

For now I will just remain in my tight circle of loved ones, Tyler and Jacques. Even my son’s dad and I get along well but that’s about it.

For now I will concentrate on being the best mother I can to my son and making sure he has as good a summer I can give him.

Epic Fail

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Big Day Out?

This weekend I am scheduled to go to a party in a state park thrown by my county’s lost pets’ Facebook page members. They were very helpful to me when Max was missing.

The people in the group are really cool and we all have our love for pets in common. It’s a bring something party that’s supposed to go from noon to four. Jacques is making pasta salad for me to take.

The idea of meeting these people in real life is exciting to me. I’ve lived in Ohio for almost four years and do not have any friends. I haven’t made friends with the mothers of Tyler’s play dates or through his school or extracurricular activities. Having depression and anxiety doesn’t make it any easier. With my weight gain from my meds and my depression I don’t feel good about myself.

And then the anxiety of getting my act together kicks in too. I have to drive a bit of a distance to the park and I have to go alone.

And how will I feel the day of the party? Too physically sick or too afraid to go? Too depressed to get into the shower and get dressed? Will I even make it?

Still, the idea of meeting a whole bunch of people that know next to nothing about me is appealing, and I never have to see them again if I don’t want to. Plus I’ve got an “out” because I’m leaving Tyler with Jacques and I don’t want him to spend hours playing video games. I know if I can actually get there and start talking to people I will be okay. It’s just that it’s been so long since I’ve socialized with anyone, I wonder if I can do it “right”.

How do you deal with social anxiety? Do you go for it or just hide under the covers?

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Religion and the Chronically Ill Parent

This post is inspired by Mama Kat’s Writer’s Workshop.

Prompt #1. Throwback Thursday: Choose a photo from a previous June and write a poem or a blog post.

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This picture dates back to a post written in June of 2011, when my son was four and a half years old. We had picked up this book at a library book sale along with a copy of the same children’s bible I had when I was a child.

Back then, due to various illnesses and conditions I had never taken Tyler to church, except for his christening. In the post I wrote about how I would have to somehow find a way to get myself together and start taking him to church, or else how would he learn about his faith?

Fast forward to the present and I have seldom taken Tyler to mass. I’m either too physically ill or mentally cannot get my head together to get there. Tyler does go to religious instruction and has made his First Holy Communion and Penance, but not surprisingly, he HATES when he is taken to mass during the few times he is taken during classes. In fact, he is near terrified of church. Riddled with anxiety and highly sensitive he is scared of the statues and stained glass, thinks the music is sad and can’t stand the smell of the incense which is sometimes burned. He keeps asking the teacher when it will be over.

I know if I was taking him to church he would be used to it by now. Every Sunday I watch mass on the internet but he refuses to watch with me. He also will not pray on a regular basis.

The classes have done him some good, however, as he does believe in God, Jesus, angels and Heaven.

Personally I have made my peace with the fact that God understands that I would go to mass if I could and does not fault me for it. I feel my faith is strong.

But I was raised in the church, went weekly up until I got sick, and sang in the children’s choir and folk group. I believe faith is a strong resource for people in dealing with life’s difficulties.

But is what I am giving my son enough? Will he have these tools as he grows older?

Many chronically ill parents have enormous guilt over not being able to do as much with their children as they like and church is just one of those things.

I just have to hope and pray that the little I can give to my son is enough.

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Results of My Memory Test

Linking up with the Chronic Friday Linkup at Being Fibro Mom and the Weekend Blog Share at Hannah Spannah.

So many of us, whether it be from a disease or medication, experience impaired memory and concentration so I decided a couple of months ago that I needed to know why or where my problems were coming from. So I took a Neuropsychiatric or Neuropsychological test.

The test was about three and a half hours long and included being told a number of words and asking to repeat them, describing words shown to me, and a test on a computer where you had to figure out the changing patterns of cards. I also had to build towers from the largest to the smallest pieces while only moving one piece at a time, which I found the hardest part of the test.

My results said that my cognitive difficulties were most likely due to a combination of my physical and mental conditions along with the medication I was taking for said conditions. There was no evidence of dementia.

My psychiatrist’s recommendation was to minimize the use of my sleeping medication, the sedative that I take for anxiety, and the medication I take for my nausea. The medications that I take for bipolar disorder could also contribute to impaired memory.

So you mean everything I am taking to be a functional human being is playing havoc with my brain???

Suggested strategies for compensating included finding specific locations for important items, task lists, and tracking daily activities in a blog (hey!) or a notebook. I am pretty much already doing these things and still having difficulties.

I really don’t want to fiddle around with or lower my medication dosages so I guess I will have to keep dealing with these impairments with a sense of humor.

How do you deal with physical or mental and medication “brain fog”?

Do you have any funny stories about your memory troubles?

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Book Reviews!

This post is inspired by Mama Kat’s Writer’s Workshop.

These reviews are taken from my goodreads profile. I hope you will follow me on there!

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I read this book as a part of the Rory Gilmore Reading Challenge.

This book centers on two characters, Anna Karenina, who gives up her marriage and son to live life with another man, and Konstantin Levin, who is searching for the meaning of life. Levin is supposed to represent Tolstoy in the book. The plot reads like a soap opera set in Russia in the late 1870’s. The only things that I would say grew tiresome for me is Levin’s life as a farmer and the workings of Russian politics, all of which I skimmed!

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In the 1950s at Johns Hopkins Hospital, an African American woman’s cells were taken without her knowledge. Her cells became legendary because they were the first cells grown in culture, still being grown today and have helped develop the polio vaccine, brought scientists closer to finding cures for cancer, and gene mapping. Yet little was known about the woman behind the “HeLa cells” before Rebecca Skloot’s fascinating book. The writer delves into the lives of Henrietta Lacks and her family and explores issues such as patient consent and experimentation on African Americans. Definitely recommended!

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23 year old Bobby Callahan hires private investigator Kinsey Milhone because he believes someone is trying to kill him after a car accident left him with impaired memory. Kinsey tries to fill in the gaps before someone tries again. I read these books years ago but have forgotten how good they were. This is a great story with plenty of suspense and I look forward to going through the rest of the alphabet!

I hope you enjoyed my reviews. Once again feel free to follow me on goodreads so we can share recommendations!

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Anxiety!!!

Linking up for the Chronic Friday Linkup at Being Fibro Mom.

For the last few months I’ve been experiencing overwhelming anxiety, just in time for my son’s summer vacation. I know I have to take him places and do things with him but I fear going outside.

I feel like I am anxious about everything. An hour or so before I have to go into the shower I start feeling sick (nauseous) and shaky. I take a couple of sedatives but they seem like they take hours to kick in. I can’t eat but I force myself to eat a little.

Between depression and anxiety, showering is an event. Just working up the courage to take off my clothes is an experience. I try to get out of there as quickly as possible and I hate having to shave because it extends my showering time. I don’t feel good after showering, you know, that clean, feel good feeling? I don’t get that any more, I am still shaking after the shower and when I am done I lay on the couch as soon as possible, exhausted.

The next step is putting on my clothes, I am anxious about that but I’m not sure why. I have
this anxiety about what to wear, I guess, or maybe it is one step closer to going out.

I am fearful of getting Tyler ready too. Putting on his clothes, pushing him to brush his teeth. I also get really anxious when I have to bathe him.

I’ve been having Jacques drive Tyler and me places because I am too nervous to drive. It still takes me a while to calm down once I get to my destination, perhaps my sedatives kick in?

I also have anxiety about doing certain things. I let my mail pile up because I just can’t deal with it. When I finally do open it, I’m so spent that I can’t do anything else for the day.

Dealing with and paying bills is even worse. It upsets me to know that I have trouble with doing “adult” things.

The worst thing is, it doesn’t seem to get any better, it’s the same uphill battle every day. Even now, I have over five hours before I have to leave for Tyler’s doctors’ appointments and I am anxious about it. It just gets worse the closer it gets to me having to start to get ready.

Some of the medicine I take for depression is supposed to help anxiety but I am on so much medication that I hesitate to go on something else.

I could do better at non-medication techniques such as breathing or meditating and I do do them but they really don’t seem to work. I’m too anxious to “breathe” and I feel like I can’t.

Are you anxious? What makes it better for you?

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My Son and His OCD

(This post contains strong language and may be upsetting to some. However, it is a true representation of what happened with my son this weekend.)

Tyler has been in therapy and on medication for his OCD for a while now but it only seems to be getting worse.

Lately one of my nine and a half year old’s rituals is to put his hands together and form a triangle and look like he is praying. Then he has to touch something. On Saturday night it was particularly bad. Not only could he not stop the rituals they would not allow him to get up from his chair. It wouldn’t stop.

Suddenly he started saying, “Fuck! Fuck! Fuck! Fuck My Life! Fuck My Life!” I didn’t know what to say, I didn’t know how to help him. Nothing I tried was working. Tyler often gets frustrated with me because I can’t understand what it’s like to have OCD. He’s right, I can’t. One time he told me, “Mom, you just don’t get it”, a phrase that was all too familiar for me in dealing with people and my chronic illnesses.

Tyler kept screaming and he said, “I want to kill myself, I want to kill myself, where are the knives?”

I said, “Tyler, are you serious about wanting to kill yourself? Because if you are I have to take you to the hospital.”

“I am serious!”, he said.

I called Grant, who does have OCD and he said he would be right over but first he was going to go to the pharmacy to get some Benadryl which had been recommended to us by his doctors, which would hopefully make him relaxed and sleepy.

As I waited I thought about what taking him to the hospital would really mean and how damaging it would be for him. I have been in-patient four times and while I did improve my stays were never without some form of damage or scars. I had often heard that the children’s unit was the worse in the hospital, that the kids were “crazy”. It would also mean Tyler staying in the hospital, spending the nights away from us, something that he has never really done. While I knew he could be helped, the visit could trigger some of his other issues.

While we were waiting for Grant he started to calm down on his own and was finally able to break the rituals. When Grant arrived we decided not to give him the Benadryl. As Grant made calls to his doctors, I asked Tyler if he still wanted to kill himself and he told me no. He also said he didn’t really want to kill himself and that he would never do that.

Grant was able to speak to a Child Psychiatrist at an emergency room who told him that it is unlikely for a child Tyler’s age to actually try to kill himself but we should monitor him very carefully over the next couple of days. He also told him that Tyler should be on double the amount of medication he was taking for his OCD for the drug to work effectively.

We see his psychiatrist and therapist on Wednesday.

No one wants to see their child in pain but I have felt mental pain and it is by far worse than physical pain. I worry about what Tyler’s mental health will be like as he ages. He has Tourette’s and has inherited Grant’s OCD and our anxiety. Will he also be bipolar like we are?

When Grant and I decided to have a child we went for genetic testing. We were told our children had a 50% chance of developing some sort of mental illness because of Grant’s mental health issues. My mental health problems started postpartum. While I will never regret the birth of my son I question whether or not Grant and I would have decided to have a baby if both of us were mentally ill.

I think about the teenage years and know they are difficult enough for any child, but what will it be like for one with mental illnesses?

I pray nightly for Tyler’s health and feel that we are doing the best we can with having him be in therapy and on medication but I just feel so sorry that we have brought these conditions on our son.

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