Perspective

My head hurts .... that is not unusual the day after treatment, I just usually do not share it. But today my head hurts, my stomach is upset and I am exhausted. All part of what I call my treatment hangover.

But in spite of my body complaining, I was able to drive home from my parents, unpack, go to the bank and the pharmacy. And then I made the Kiwanis meeting at a local farm we were touring. And then met someone at the church who was interested in some of the tomato starts we are selling.

Now it is early evening and my body is screaming to skip dinner and go to bed. I am trying to ignore it to the best of my ability, but I have a feeling the body is going to win on this one.

I know that there are people who sail through gamma globulin treatments without side effects. I keep pointing out to God that I would really like to be one of those people. That is about the time when he reminds me of how much better it is than it was last time I was on treatment. They really have done a great job of trying to control the side effects. I was reminded of that several weeks ago when I had the rough treatment, where I threw up for four days .... Oh yeah, I remember now what it was like last time.

So I will do my best not to whine or complain and just let it be what it is. I need to remind myself that each and every drop of gamma globulin is actually saving my life. And nausea, diarrhea, muscle aches and fatigue are a small price to pay.

Perspective really makes a difference. I am choosing joy, and I am choosing to look at the bigger picture and to not get lost in the yuck. Life is good and there is joy all around and so much yet still ahead of me.

Who knows what tomorrow will hold .....

Just Connie

Home for Treatment

I spent the night with mom and dad last night. I also brought my gamma globulin and all treatment supplies so I could have treatment here. So at 6am I took my first round of pre treatment drugs. I had a good solid breakfast and at 7 took round #2 of pre treatment drugs. Then gathered my normal morning meds and took those as well.

Then I began putting together all the equipment for the infusion. By 8am I was set up and ready to teach my mother how to place the needles for treatment. Mom was a rock star and did such a good job.  She can come and be part of my medical team anytime.

For the next 9 hours I took the infusion, took the mid treatment drugs and the post treatment drugs. So I am fighting to come out of the drug haze and begin to wake me up so I can head home first thing in the morning.

I am thankful for this medicine that is giving me life. Grateful for all the people, who have stepped up to help me.

And of course it is good to be home!

Just Connie

Home Time

I do not get to spend a lot of time with my family. Between treatments, doctors and my church and community work, there just is not much time to drive for 2 hours one way for family events. But today after church, I packed up, grabbed Hope Puppy and drove to Burlington for a family birthday party. It has been wonderful to be with my family, get caught up on the latest news and just enjoy being home.

I feel very blessed by my family, they are fun, loving and supportive. I know that is not how many experience their families and I am reminded today how fortunate I am.

Tomorrow morning I will prepare to have treatment here and my mother and my sister in law will help me place the needles. I am also blessed that my family is willing to help with the medical stuff.

So tonight I am grateful and I am blessed.

That is a pretty good place to be ...

Just Connie

Second Increased Treatment

I try to not let my illness and treatment control my life. But I have to admit that it ,has been very challenging this past couple of weeks. Part of it is that there rend ditto all side effects which seem to be lingering longer. Side effects such as nausea, extreme fatigue, the constant intestinal issues and the migraine. It really cuts into my work week and my hministry week as well. It is challengingntrying  to fit everything in.

Today began with my 6am yoga class and then I rushed home cleaned up packed up my pre meds  and headed to the weekly Chamber Meeting. I take my first round of premeds which is basically more steroids and meds for my stomach. I spend the next hour taking notes and then at 9 I take my second round of premeds. Then I pack up and head home.

Once there I load the syringes with the gamma globulin attach all the needles and tubes. Lay out my mid treatment drugs and my post treatment drugs. And wait for who ever is going to help me put the needles in the back of my arms where I cannot reach it. Once I have all the needles in, the syringe is put in the pump and over the next several hours, the meds are slowly dispersed as I sleep.

I usually wake up when the pump clicks off and I stagger to the bathroom to pull the needles out, disinfect the area, stop any bleeding and bandage things up. Then I package everything up to be ready for the next treatment. I then eat something, stagger back to bed and begin to sleep the drugs off.

It makes for a long day but I have been very thankful for the people  who are willing to give their time to help with treatment. I see the immunologist in a couple of weeks and in a month I will get my next blood panel to see if the antibodies are coming up.

So in spite of losing a couple of days a week, in treatment I am still trying to live full and free. I read  books, I hike, I spend time with friends  and I will soon be paddle boarding. I am immersed in ministry and life is good.

I choose to focus on the positive and expect the best. There are good things ahead for me, I just have to keep walking this journey.

Looking forward to what is next ....

Just Connie

1st Increased Treatment

I am laying in a dark room. I feel fuzzy, exhausted, a bit nauseous and my intestinal system is screaming for help. Today was the first day of the increased treatment. It went fairly smoothly until the moment I woke up throwing up. That was not a good way to end the treatment, but it really got my attention in a hurry.

I have been faithfully taking my post treatment drugs, hoping to stay on top of the side effects. I am not as sick as I was a couple of weeks ago when my pump malfunctioned, but it is definitely more side effects than I usually have been having. So I texted my family doctor to keep him in the loop, and went back to bed. I am hoping to sleep off the worse of the side effects.

I am praying for no side effects, that my immune numbers will jump up over the next four weeks and that physically, emotionally and spiritually. I will be follow God as I journey through this. It's is different when you are caving a potentially deadly disease by yourself. And though I have wonderful doctors, incredible loving friends ... The reality is that I do this treatment by myself. When I started throwing up, I had to decide whether I was going  to need intervention and help. I have a tendency to usually error on the side of "I can tough this out". Luckily I can text my dicey or or one of my paramedic friends and got some perspective.

So for today, I am taking it as it comes. With the good, the bad and the ridiculous ... Hopefully every piece of this is bring new life and new hope for my future. I choose to embrace it and be thankful. I am learning so much on this journey.  Treatment number 2 is on Wednesday, who knows what I will learn ....

Just Connie

Increase in Treatment

I have been waiting to get the results of my latest immune panel blood work. My IGG antibodIes have been steadily coming up each month while I have been in treatment. Last month they were at 632. My doctor increased treatment to help get the antibodies to a Minimum 800+. So with the increased treatment I was expecting some good numbers. However, the number that that was staring at me from the lab report was 645. Virtually unchanged, even with the increase.

I have to admit that I was surprised and disappointed. I was so sure that I was going to see numbers that were close to therapeutic levels .... But no. And it was with a sinking heart that I realized that this would most likely mean another increase in treatment. An increase in treatment brings additional side effect issues.

My immunologist called yesterday and yes, he is increasing treatment by 1 gram each treatment. So I will be getting 10 grams each week instead of the 8 grams I have been getting for the last month. I will take it as it comes and continue to work on mitigating the side effects. I am not anxious to end up dehydrated again.

I am a firm believer in embracing the reality we have, but some realities are a lot pricklier to embrace than others. Never the less, there are things for me to learn on this journey nd I will search for joy and laughter along the way.

There are good things ahead ...

Just Connie

DOCTOR INPUT

Well after throwing up for the past week, trudging with intestinal issues and all around misery. I contacted my doctor who mwe the time to fit me into his schedule. I a bit embraced to be there one I knew I was not critical... I was just kind of miserable. But knowing that something was not right, I drug myself in. He poked an prodded and lutenents the storm going on in my stomach and intestinal track and said we need to change some of your meds to see if we can find you some relief.

He then sent me down the hall for blood work. The nurse poked around on my rm for. While and then went no to the r that with out. Without some IV fluids she was not going to able to draw any blood. So they begin the process of finding a vein and getting everything ready. For the next two hours, I watch the fluids go in andmy headache and My weak shakiness begin to get better. They also added an anti nausea drug to the IV which really improve the whole nausea thing.

By the time the fluids were in, I felt like I was going to survive to fight another day.

So, today was treatment and everything went flawlessly. I m normal rugged and tire an ore, it a medium headache. I am feeling pretty good about it right now. I should get the test results in the next couple of day and that will rule out a bunch of tuff we will not have to work about any more. So we can isolate and k now what we are dealing with.

I have to admit this last go roun had me so phill week tht I really struggled  with my emotions. all I white was my mommy at this point. But I held it together and did not tell her that beacause sshe would have been here in heart beat.

But tomorrow is other day and I expecting great things.

So looking forward to it,

Just Connie

Rough Treatment Week

I had a rough treatment on Tuesday. Everything started off normally enough. I took my two rounds of pre meds, loaded the syringe and tubing, inserted the needles and went and laid down. I woke up tow hours later and my treatment should have been finished, only to find out that it had not hardly begun. Something went wrong with the pump that pumps the medicine through the tubing. The pump was not working, I looked at dismay at the malfunction pump, and then remembered that I had squirreled a couple of extra pumps away when they had changed my treatment and sent new ones out.

So with all the tubes and needles and useless ump I drug the ladder into the bathroom and climbed up to dig through the upper cupboard I had thrown the extra medical supplies in. Yes! There was a new pump! So I unhooked the old pump and hooked up the new pump and with relief, heard it clicking away indicating that it was working. However, it was with dismay that I realized that this completely threw all of my pre meds out of synch with the treatment. Instead of being 1 and 2 hours before treatment, the meds would now be 3-4 hours before treatment. Knowing there was not much I could do at this point I went back to bed to sleep through the rest of the treatment.

But by the end of treatment I was nauseous and throwing up. And I have thrown up for the last 4 days. Achy, miserable and fighting other side effects I was reminded why I hated treatment so much last time I was on it. The good news is that it was clear evidence that they are doing a really good job of controlling the symptoms this time. I need to thank both my pulmonologist and my immunologist for that.

I think I am finally done with the throwing up. I am still a bit green around the edges but I have kept down my morning toast and so far the lunch I just ate which was my first real food in 5 days.

I remain thankful for the life this treatment is giving me. And even though at times I chaff against the time it takes and sometimes the sheer misery of the treatments, I am still glad. I have also been blessed by the faithful who have been praying for me, making sure I had 7-up and the food I needed and even carrying in pellets for my pellet stove. I am truly blessed in so many ways.

God is good all the time, even on rough treatment weeks .... or I can say especially on rough treatment weeks.

Just Connie

Update

I feel blessed by the doctors I have working on my health and wellbeing. Today I saw my pulmonologist who did a battery of breathing tests and a chest x-ray. The breathing tests showed in improvement in every area accept one and my chest x-ray showed that the pneumonia I have had for months has cleared up. It also showed that there was scarring on the lower lobes of my lungs. He said that once I am recovered he will probably do a CT scan and assess how much damage has been done to my lungs over the past year.

Over all he was very pleased and pointed out that the gamma globulin therapy is making a difference already for me. He is also expecting good results from the new asthma medication that I begin on Wednesday at Salem Hospital. He has three other patients who are on it and he has seen significant results in all of them. He said that most of them noticed a difference after the second treatment. So it will take at least 2-3 months for me to notice a difference.

He was also pleased at how the steroid step down has been going. I am so thrilled to be stepping down over the past 6 weeks that it is hard to even frame it in worlds. Once I am off steroids so many of the medications I take, I will not have to take anymore because they are all related to the steroids. I have already seen a drop in my blood sugar and that is wonderful. He did caution me that because I have been on high does steroids for 10 months that he will have to keep a close eye on my adrenal system because for the last 10 months it has not been working at all. But I have at least 3-4 months to continue to work on the steroid step down. But so far it is going very well.

Next week I take another immune system blood test to see how effective the gamma globulin treatment has been. I am expecting that it will have come up again. But will it have come up enough? That is the question. I would love to get to the point that I am doing one treatment a week.

But all in all, it is all good news. I will keep on ... keeping on. Doing the things that they tell me I have to do to stay upright and breathing.

And upright and breathing is a great place to start .....

Just Connie

It feels good to still be on the upswing